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1.
BMC Health Serv Res ; 24(1): 323, 2024 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-38468253

RESUMO

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.


Assuntos
COVID-19 , Pessoas com Deficiência , Humanos , Tecnologia Digital , Pandemias , COVID-19/epidemiologia , Atenção à Saúde
2.
Dev Med Child Neurol ; 66(5): 623-634, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-37849380

RESUMO

AIM: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. METHOD: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. RESULTS: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. INTERPRETATION: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.


Assuntos
Paralisia Cerebral , Transição para Assistência do Adulto , Adolescente , Humanos , Paralisia Cerebral/terapia , Pessoal de Saúde , Irlanda , Modelos Teóricos , Pais , Pesquisa Qualitativa , Adulto Jovem
3.
Cochrane Database Syst Rev ; 7: CD013610, 2023 07 18.
Artigo em Inglês | MEDLINE | ID: mdl-37462324

RESUMO

BACKGROUND: Cystic fibrosis (CF) is a life-limiting genetic disorder predominantly affecting the lungs and pancreas. Airway clearance techniques (ACTs) and exercise therapy are key components of physiotherapy, which is considered integral in managing CF; however, low adherence is well-documented. Poor physiotherapy adherence may lead to repeated respiratory infections, reduced exercise tolerance, breathlessness, reduced quality of life, malaise and reduced life expectancy, as well as increased use of pharmacology, healthcare access and hospital admission. Therefore, evidence-based strategies to inform clinical practice and improve adherence to physiotherapy may improve quality of life and reduce treatment burden. OBJECTIVES: To assess the effects of interventions to enhance adherence to airway clearance treatment and exercise therapy in people with CF and their effects on health outcomes, such as pulmonary exacerbations, exercise capacity and health-related quality of life. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. Date of last search: 1 March 2023. We also searched online trials registries and the reference lists of relevant articles and reviews. Date of last search: 28 March 2023. SELECTION CRITERIA: We included randomised controlled trials (RCTs) and quasi-RCTs of parallel design assessing any intervention aimed at enhancing adherence to physiotherapy in people with CF versus no intervention, another intervention or usual care. DATA COLLECTION AND ANALYSIS: Two review authors independently checked search results for eligible studies and independently extracted data. We used standard procedures recommended by Cochrane and assessed the certainty of evidence using the GRADE system. MAIN RESULTS: Two RCTs (77 participants with CF; age range 2 to 20 years; 44 (57%) males) met the inclusion criteria of this review. One study employed an intervention to improve adherence to exercise and the second an intervention to improve adherence to ACT. Both studies measured outcomes at baseline and at three months, but neither study formally assessed our primary outcome of adherence in terms of our planned outcome measures, and results were dependent on self-reported data. Adherence to ACTs One RCT (43 participants) assessed using specifically-composed music alongside ACTs compared to self-selected or no music (usual care). The ACT process consisted of nebuliser inhalation treatment, ACTs and relaxation or antibiotic nebuliser treatment. We graded all evidence as very low certainty. This study reported adherence to ACTs using the Morisky-Green questionnaire and also participants' perception of treatment time and enjoyment, which may influence adherence (outcome not reported specifically in this review). We are uncertain whether participants who received specifically-composed music may be more likely to adhere at six and 12 weeks compared to those who received usual care, risk ratio (RR) 1.75 (95% confidence interval (CI) 1.07 to 2.86) and RR 1.56 (95% CI 1.01 to 2.40) respectively. There may not be any difference in adherence when comparing specifically-composed music to self-selected music at six weeks, RR 1.21 (95% CI 0.87 to 1.68) or 12 weeks, RR 1.52 (95% CI 0.97 to 2.38); or self-selected music to usual care at six weeks, RR 1.44 (95% CI 0.82 to 2.52) or 12 weeks, RR 1.03 (95% CI 0.57 to 1.86). The music study also reported the number of respiratory infections requiring hospitalisation at 12 weeks, with no difference seen in the risk of hospitalisation between all groups. Adherence to exercise One RCT (24 participants) compared the provision of a manual of aerobic exercises, recommended exercise prescription plus two-weekly follow-up phone calls to reinforce exercise practice over a period of three months to verbal instructions for aerobic exercise according to the CF centre's protocol. We graded all evidence as very low certainty. We are uncertain whether an educational intervention leads to more participants in the intervention group undertaking increased regular physical activity at three months (self-report), RR 3.67 (95% CI 1.24 to 10.85), and there was no reported difference between groups in the number undertaking physical activity three times per week or undertaking at least 40 minutes of physical activity. No effect was seen on secondary outcome measures of spirometry, exercise capacity or any CF quality of life domains. This study did not report on the frequency of respiratory infections (hospitalised or not) or adverse events. AUTHORS' CONCLUSIONS: We are uncertain whether a music-based motivational intervention may increase adherence to ACTs or affect the risk of hospitalisation for a respiratory infection. We are also uncertain whether an educational intervention increases adherence to exercise or reduces the frequency of respiratory infection-related hospital admission. However, these results are largely based on self-reported data and the impact of strategies to improve adherence to ACT and exercise in children and adolescents with stable CF remains inconclusive. Given that adherence to ACT and exercise therapy are fundamental to the clinical management of people with CF, there is an urgent need for well-designed, large-scale clinical trials in this area, which should conform to the CONSORT statement for standards of reporting and use appropriate, validated outcome measures. Studies should also ensure full disclosure of data for all important clinical outcomes.


Assuntos
Fibrose Cística , Masculino , Adolescente , Criança , Humanos , Pré-Escolar , Adulto Jovem , Adulto , Feminino , Fibrose Cística/complicações , Exercício Físico , Terapia Respiratória , Qualidade de Vida , Modalidades de Fisioterapia
4.
Semin Arthritis Rheum ; 61: 152221, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37327762

RESUMO

OBJECTIVE: To identify and describe the extent, nature, characteristics, and impact of primary care-based models of care (MoCs) for osteoarthritis (OA) that have been developed and/or evaluated. DESIGN: Six electronic databases were searched from 2010 to May 2022. Relevant data were extracted and collated for narrative synthesis. RESULTS: Sixty-three studies pertaining to 37 discrete MoCs from 13 countries were included, of which 23 (62%) could be classified as OA management programmes (OAMPs) comprising a self-management intervention to be delivered as a discrete package. Four models (11%) focussed on enhancing the initial consultation between a patient presenting with OA at the first point of contact into a local health system and the clinician. Emphasis was placed on educational training for general practitioners (GPs) and allied healthcare professionals delivering this initial consultation. The remaining 10 MoCs (27%) detailed integrated care pathways of onward referral to specialist secondary orthopaedic and rheumatology care within local healthcare systems. The majority (35/37; 95%) were developed in high-income countries and 32/37 (87%) targeted hip/and or knee OA. Frequently identified model components included GP-led care, referral to primary care services and multidisciplinary care. The models were predominantly 'one-size fits all' and lacked individualised care approaches. A minority of MoCs, 5/37 (14%) were developed using underlying frameworks, three (8%) of which incorporated behaviour change theories, while 13/37 (35%) incorporated provider training. Thirty-four of the 37 models (92%) were evaluated. Outcome domains most frequently reported included clinical outcomes, followed by system- and provider-level outcomes. While there was evidence of improved quality of OA care associated with the models, effects on clinical outcomes were mixed. CONCLUSION: There are emerging efforts internationally to develop evidence-based models focused on non-surgical primary care OA management. Notwithstanding variations in healthcare systems and resources, future research should focus on model development alignment with implementation science frameworks and theories, key stakeholder involvement including patient and public representation, provision of training and education for providers, treatment individualisation, integration and coordination of services across the care continuum and incorporation of behaviour change strategies to foster long-term adherence and self-management.


Assuntos
Osteoartrite do Joelho , Humanos , Osteoartrite do Joelho/terapia , Atenção à Saúde , Atenção Primária à Saúde
5.
Disabil Rehabil ; : 1-9, 2023 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-37154619

RESUMO

PURPOSE: The aim of this study was to explore the acceptability of a 10-week progressive resistance training programme from the perspective of ambulatory adolescents with CP and physiotherapists. MATERIAL AND METHODS: Semi-structured interviews were conducted with 32 adolescents with spastic CP, aged 10-19 years in Gross Motor Function Classification System (GMFCS) levels I-III, and 13 physiotherapists. Adolescents had completed a 10-week progressive resistance training programme and physiotherapists had delivered the programme. The Framework Method was used to analyse data. RESULTS: The analysis identified four themes. "It's do-able" described the acceptability of the programme structure, including the frequency of sessions and the duration of the programme. "They were difficult but I did it" described the acceptability of the exercises. "It is completely different," explored the experience of using equipment to progress the programme and "I wish I could do it on a permanent basis" discussed continuing to participate in resistance training. CONCLUSIONS: Findings suggest that resistance training is largely acceptable to adolescents and physiotherapists. Acceptability was enhanced by having a weekly supervised session and being able to adapt and progress the exercises to meet the individual's ability. However, there are challenges to implementing progressive resistance training as part of routine practice.Clinical trial registration number: ISRCTN90378161.


Progressive resistance training is largely acceptable to ambulatory adolescents with cerebral palsy and physiotherapists.Adolescents' ability to complete the exercises increased their confidence and motivated them to continue with the programme.Adolescents valued being supervised by a physiotherapist and believed they needed a physiotherapist to progress the exercises and motivate them to perform to their maximum capacity.Within the National Health Service (NHS), limited time and equipment may prevent implementation of resistance training for adolescents with CP in accordance with guidelines.A short-term resistance training programme delivered by physiotherapists in the NHS may provide the foundation for continuing participation in resistance training in a community setting.

6.
Dev Med Child Neurol ; 65(9): 1174-1189, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36807150

RESUMO

AIM: To assess the prevalence and incidence of chronic conditions among adults with cerebral palsy (CP) and compare them to the prevalence and incidence among adults without CP. METHOD: We searched MEDLINE and Embase for studies reporting the prevalence or incidence of one or more chronic conditions among adults with CP. Two independent reviewers screened titles, abstracts, and full-text articles. Two independent reviewers extracted data relating to prevalence and incidence and appraised study quality. We performed random-effects meta-analyses to pool prevalence and incidence. RESULTS: We identified 69 studies; 65 reported the prevalence of 53 conditions and 13 reported the incidence of 21 conditions. At least 20% of adults had the following conditions: depression (21%); anxiety (21%); mood affective disorders (23%); asthma (24%); hypertension (26%); epilepsy (28%); urinary incontinence (32%); malnutrition (38%); and scoliosis (46%). Adults with CP were more likely to have type 2 diabetes, anxiety, bipolar disorder, depression, schizophrenia, hypertension, ischaemic heart disease, stroke, cerebrovascular disease, asthma, liver disease, osteoarthritis, osteoporosis, underweight, and chronic kidney disease than adults without CP. INTERPRETATION: These data from 18 countries, which provide an international perspective, may be used to promote awareness, identify targets for intervention, and inform the development of appropriate supports for adults with CP.


Assuntos
Asma , Paralisia Cerebral , Diabetes Mellitus Tipo 2 , Hipertensão , Humanos , Adulto , Paralisia Cerebral/complicações , Paralisia Cerebral/epidemiologia , Prevalência , Incidência , Doença Crônica
7.
Disabil Rehabil ; 45(13): 2160-2168, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35786164

RESUMO

PURPOSE: The aims of this study were to describe how and why adults with CP living in the UK and Ireland accessed and used physiotherapy services; to describe the type of physiotherapy accessed and satisfaction with physiotherapy services and to examine the associations between relevant factors. METHODS: A cross-sectional semi-structured online survey was employed. Participants were adults with CP aged 18 and above living in the UK and Ireland; able to complete an online questionnaire in English independently or with technical or physical assistance. Data were collected from April 2019 to February 2020. RESULTS: Participants (n = 162) were aged 18-74 years. The majority were female (75%) and lived in the UK (83%). Ninety percent of participants reported a need for physiotherapy but only 35% received physiotherapy services. The most common reason for visiting physiotherapy was mobility decline (62%). Satisfaction with the availability and quality of physiotherapy services were 21% and 27%, respectively. Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed. CONCLUSION: Adults with CP did not receive the physiotherapy services that they perceived they needed. There is a need to develop physiotherapy services in collaboration with people living with CP.Implications of rehabilitationAdults with cerebral palsy (CP) needed physiotherapy services, but were not receiving the physiotherapy services that they perceive they needed.Adults were not satisfied with the availability or quality of physiotherapy services received.Adults with scoliosis and mobility decline were less likely to report that they received the physiotherapy they needed.There is a need to develop physiotherapy services from a life-span perspective for adults living with CP.


Assuntos
Paralisia Cerebral , Escoliose , Humanos , Masculino , Adulto , Feminino , Irlanda , Estudos Transversais , Reino Unido , Modalidades de Fisioterapia , Satisfação Pessoal
8.
Dev Med Child Neurol ; 65(2): 285-293, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35729753

RESUMO

AIM: To assess if young people with cerebral palsy experience and health professionals provide practices that may improve transition from child to adult health services. METHOD: Seventy-five young people (31 females, 44 males; mean age 18 years 5 months [standard deviation 2 years 2 months]) and/or parents and 108 health professionals completed a questionnaire describing their experience or the provision of nine transition practices. RESULTS: The percentage of young people reporting each practice was: appropriate parent involvement (90%); promotion of health self-efficacy (37%); named worker who supports the transition process (36%); self-management support for physical health (36%); self-management support for mental health (17%); information about the transition process (24%); meeting the adult team (16%); and life skills training (16%). Post-discharge, 10% of young people reported that their general practitioner (GP) received a discharge letter. The percentage of health professionals reporting each practice was: promotion of health self-efficacy (73.2%); self-management support (73.2%); information (69%); consulting the parent and young person about parent involvement (63% and 66%); discharge letter to a GP (55%); life skills training (36%); named worker (35%); meeting the adult team (30%); and senior manager (20%). INTERPRETATION: Many young people did not experience practices that may improve the experience and outcomes of transition. Young people should be involved in the development and delivery of transition to ensure it meets their needs. WHAT THIS PAPER ADDS: Many young people with cerebral palsy (CP) do not receive support that may improve the experience of transition. Appropriate protocols and training for health professionals may improve the provision of transition and reduce inconsistency in care between and within organizations. Young people and their families should be involved in service design, delivery, and evaluation related to the transition to ensure it meets their needs.


Assuntos
Paralisia Cerebral , Transição para Assistência do Adulto , Masculino , Adulto , Criança , Feminino , Humanos , Adolescente , Estudos Transversais , Paralisia Cerebral/terapia , Assistência ao Convalescente , Alta do Paciente , Inquéritos e Questionários
9.
Front Rehabil Sci ; 3: 874012, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36188919

RESUMO

Introduction: Cerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the doctoral research process. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic. Methods: This paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the doctoral researcher and adults with CP using the INVOLVE Values and Principles framework. Five adults with CP were consulted throughout the doctoral research programme. The data for this paper is a combination of reflection notes, email exchanges, meeting minutes and informal discussions with the PPI team on their experiences of being involved in the PPI process. The content of this paper is informed by GRIPP 2 checklist. Results: The doctoral researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage of the doctoral research process. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research. Conclusion: Involving adults with CP positively impacted the doctoral research process. It is recommended to consider individual access needs to ensure meetings and information are accessible for disabled adults. Our reflective findings and recommendations may help other researchers who plan to involve adults with CP in doctoral research.

10.
J Clin Med ; 11(16)2022 Aug 18.
Artigo em Inglês | MEDLINE | ID: mdl-36013083

RESUMO

Data describing the unmet health needs of young adults with cerebral palsy (CP) may support the development of appropriate health services. This study aimed to describe unmet health needs among young adults with CP in Ireland and examine if these differed between young adults who were and were not yet discharged from children's services. In this cross-sectional study, young adults with CP aged 16-22 years completed a questionnaire assessing unmet health needs. Logistic regression was used to examine the association between discharge status and unmet health needs. Seventy-five young adults (mean age 18.4 yr; 41% female; 60% in GMFCS levels I-III) were included in the study. Forty (53%) had been discharged from children's services. Unmet health need, as a proportion of those with needs, was highest for speech (0.64), followed by epilepsy (0.50) and equipment, mobility, control of movement and bone or joint problems (0.39 or 0.38). After adjusting for ambulatory status, unmet health needs did not differ according to discharge status. The proportion of young adults with unmet health needs highlights the importance of taking a life-course approach to CP and providing appropriate services to people with CP regardless of age.

11.
Dev Med Child Neurol ; 64(4): 429-446, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34705276

RESUMO

AIM: To determine the proportion of adults with cerebral palsy (CP) using health services and frequency of use, and to explore experiences and perceptions of health services for this population. METHOD: A mixed-methods systematic review was conducted using the Joanna Briggs Institute methodology. Five databases were searched to September 2020. Observational and qualitative studies were included. Two reviewers screened titles, abstracts, and full texts; extracted data; and assessed the quality of included studies. Separate meta-analyses were used to pool the proportion of adults using each service and frequency of use. A meta-aggregation approach was used to synthesize qualitative data. Quantitative and qualitative findings were integrated using the Andersen and Newman Model of health care utilization. RESULTS: Fifty-seven studies (31 quantitative, 26 qualitative) of 14 300 adults with CP were included. The proportion of adults using services ranged from 7% (95% confidence interval [CI]: 2-13%) for urologists to 84% (95% CI: 78-90%) for general practitioners. Incidence of visits ranged from 67 (95% CI: 37-123) hospital admissions to 404 (95% CI: 175-934) general practitioner visits per 100 person-years. Qualitative themes highlighted issues regarding accessibility, caregivers' involvement, health workers' expertise, unmet ageing needs, transition, and health system challenges. INTERPRETATION: Adults with CP used a wide range of health services but faced context-specific challenges in accessing required care. Appropriate service delivery models for adults with CP are required. This review emphasizes a need to develop an appropriate service model for adults with CP to meet their needs.


Assuntos
Paralisia Cerebral , Adulto , Paralisia Cerebral/terapia , Pessoal de Saúde , Serviços de Saúde , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa Qualitativa
12.
Front Rehabil Sci ; 3: 976580, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36589713

RESUMO

Introduction: Design thinking is a human-centred process that aims to identify the needs of end-users and iteratively develop solutions. Involving end-users in the development and design of solutions may enhance effectiveness by increasing focus on the needs of the target population. This paper describes the process of co-designing resources to support the transition from child-centred to adult-orientated health services using a design thinking approach. Methods: Five co-design workshops were conducted remotely with a young person advisory group and parent advisory group. A design thinking process guided by the Stanford D.School approach was used to understand the transition needs of young people and their parents and iteratively develop solutions to improve end-user experience. Results: Eight resource prototypes were generated: (1) designated transition coordinator, (2) digital stories of transition experience (3) written informational support (4) transition website, (5) transition checklists and worksheets (6) transition app, (7) transition programme or course and (8) educational programme for health professionals. Conclusion: Design thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.

13.
HRB Open Res ; 4: 48, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34291185

RESUMO

Background: The burden of osteoarthritis (OA) to individuals and health systems is substantial and is expected to increase due to population ageing and rising prevalence of obesity and multimorbidity. Primary care-based models of care (MoCs) are being increasingly developed in response to this growing burden. However, these MoCs have yet to be formally reviewed. A MoC can be defined as an 'evidence-informed strategy, framework or pathway that outlines the optimal manner in which condition-specific care should be delivered to consumers within a local health system'. Objective: To identify and describe the available research regarding the extent, nature and characteristics of MoCs for OA that have been developed or evaluated in primary care. Methods: A scoping review will be conducted in accordance with the Arksey and O'Malley scoping review framework and the PRISMA-ScR guidelines. Systematic literature searches of MEDLINE, EMBASE, CINAHL, PsychINFO, Web of Science and LILACs will be conducted from 2010 to present, aligning with publication dates of recent clinical guidelines. A structured iterative search of grey literature will be conducted. Full-text original quantitative or mixed method studies which describe the development or evaluation of MoCs for OA in primary care will be considered. Data will be charted and synthesised and a narrative synthesis will be conducted. Conclusions: This scoping review will provide a broad overview regarding the extent, nature and characteristics of the available literature on primary care based MoCs for OA. Findings will be used to identify gaps in the current evidence to identify areas for future research.

14.
Front Neurol ; 12: 659031, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34054701

RESUMO

Background: Although the provision of healthcare for people with cerebral palsy (CP) is typically focussed on childhood, many people with CP require access to services periodically throughout their life. Few studies have examined patterns of health service use among young people with CP in England. Understanding patterns of use may inform future service development. Objective: To describe patterns of visits to rehabilitation and medical professionals among ambulatory young people with CP living in England, and identify factors associated with service use. Methods: Sixty-two young people with CP aged 10-19 years [mean (SD) age 13.7 (2.5) years] in Gross Motor Function Classification System (GMFCS) levels I-III reported visits to a range of health professionals, hospital admissions and visits to the emergency department over a median duration of 34 weeks (min-max: 12-34 weeks). Negative binomial models were used to examine factors associated with number of visits. Results: Physiotherapists were the most commonly used professional, with 67.7% of participants visiting a physiotherapist at least once, followed by dentists (66.1%), general practitioners (48.4%), occupational therapists (40.3%) and orthopaedic surgeons (40.3%). Physiotherapists were also the most frequently visited professional with a total of 473 visits (13.3 visits per person-year). Speech and language therapists (5.0 visits per person-year), occupational therapists (4.5 visits per person-year) and nurses (4.3 per person-year) were the next most frequently visited professionals. Age, GMFCS level, and speech impairment were associated with rate of visits to a physiotherapist. Conclusions: The proportion of young people who visited medical and rehabilitation professionals during the study period varied considerably depending on the profession. Generally, the proportion of young people using services was low. In the context of limited resources, data on service use in combination with data on unmet need, may support the reorganisation of services to maximise benefits to young people with CP.

15.
Front Physiol ; 12: 632502, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33776793

RESUMO

BACKGROUND AND AIMS: Immunoregulatory checkpoint receptors (CR) contribute to the profound immunoparesis observed in alcohol-related liver disease (ALD) and in vitro neutralization of inhibitory-CRs TIM3/PD1 on anti-bacterial T-cells can rescue innate and adaptive anti-bacterial immunity. Recently described soluble-CR forms can modulate immunity in inflammatory conditions, but the contributions of soluble-TIM3 and soluble-PD1 and other soluble-CRs to immune derangements in ALD remain unclear. METHODS: In Alcoholic Hepatitis (AH; n = 19), alcohol-related cirrhosis (ARC; n = 53) and healthy control (HC; n = 27) subjects, we measured by Luminex technology (i) plasma levels of 16 soluble-CRs, 12 pro/anti-inflammatory cytokines and markers of gut bacterial translocation; (ii) pre-hepatic, post-hepatic and non-hepatic soluble-CR plasma levels in ARC patients undergoing TIPS; (iii) soluble-CRs production from ethanol-treated immunocompetent precision cut human liver slices (PCLS); (iv) whole-blood soluble-CR expression upon bacterial challenge. By FACS, we assessed the relationship between soluble-TIM3 and membrane-TIM3 and rescue of immunity in bacterial-challenged PBMCs. RESULTS: Soluble-TIM3 was the dominant plasma soluble-CR in ALD vs. HC (p = 0.00002) and multivariate analysis identified it as the main driver of differences between groups. Soluble-CRs were strongly correlated with pro-inflammatory cytokines, gut bacterial translocation markers and clinical indices of disease severity. Ethanol exposure or bacterial challenge did not induce soluble-TIM3 production from PCLS nor from whole-blood. Bacterial challenge prompted membrane-TIM3 hyperexpression on PBMCs from ALD patient's vs. HC (p < 0.002) and was inversely correlated with plasma soluble-TIM3 levels in matched patients. TIM3 ligands soluble-Galectin-9 and soluble-CEACAM1 were elevated in ALD plasma (AH > ARC; p < 0.002). In vitro neutralization of Galectin-9 and soluble-CEACAM1 improved the defective anti-bacterial and anti-inflammatory cytokine production from E. coli-challenged PBMCs in ALD patients. CONCLUSIONS: Alcohol-related liver disease patients exhibit supra-physiological plasma levels of soluble-TIM3, particularly those with greater disease severity. This is also associated with increased levels of soluble TIM3-ligands and membrane-TIM3 expression on immune cells. Soluble-TIM3 can block the TIM3-ligand synapse and improve anti-bacterial immunity; however, the increased levels of soluble TIM3-binding ligands in patients with ALD negate any potential immunostimulatory effects. We believe that anti-TIM3 neutralizing antibodies currently in Phase I clinical trials or soluble-TIM3 should be investigated further for their ability to enhance anti-bacterial immunity. These agents could potentially represent an innovative immune-based supportive approach to rescue anti-bacterial defenses in ALD patients.

16.
Physiotherapy ; 110: 26-33, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33563371

RESUMO

BACKGROUND: A number of first year students leave physiotherapy programmes every year. A high attrition rate has implications for the student and the academic institution. OBJECTIVES: To report the rate of attrition among first year physiotherapy students, and to identify contributing factor. DESIGN: Retrospective analysis. SETTING: University. PARTICIPANTS: Electronic student records for enrolled students 2010 to 2013. MEASURES: Independent variables; gender, age at entry, mode of admission, place of residence, ethnicity, fee status, level of education, disability, whether a student obtained a B in A level Biology, and whether a student repeated A level examinations. Logistic regression analysis was conducted to identify the relationship between independent variables and drop-out (failure to continue to the second year). RESULTS: Data from 338 students were included in the analysis. The percentage drop-out was 17%; 38 students (11%) failed, and 20 students (6%) withdrew voluntarily. Black and Asian students had greater odds of drop-out for any reason (Odds Ratio (OR): 6.23; 95% Confidence Interval (CI) 1.79 to 21.63, and OR: 6.43; 95% CI: 3.03 to 13.68 respectively), and due to failure (OR: 5.50, 95% CI: 1.27 to 23.70, and OR: 7.19; 95% CI: 3.02 to 17.08, respectively) compared to white British students. Students who lived off-campus were more likely to withdraw from the programme irrespective of ethnicity (OR: 4.65; 95% CI: 1.41 to 15.34). CONCLUSION: A significant number of students from ethnic minority backgrounds failed to progress. Specific strategies to retain students from ethnic minority backgrounds should be implemented. Students who live off-campus may be at high risk of drop-out; reasons for this should be investigated.


Assuntos
Especialidade de Fisioterapia/educação , Evasão Escolar/estatística & dados numéricos , Adulto , Avaliação Educacional , Escolaridade , Feminino , Humanos , Masculino , Estudos Retrospectivos , Universidades , Adulto Jovem
17.
BMJ Open ; 11(1): e042652, 2021 01 25.
Artigo em Inglês | MEDLINE | ID: mdl-33495255

RESUMO

OBJECTIVES: Determine the risk of incident dementia in adults with cerebral palsy (CP) compared with age, sex and general practice (GP) matched controls. DESIGN: Retrospective cohort study. SETTING: UK GPs linked into the Clinical Practice Research Datalink (CPRD). PARTICIPANTS: CPRD data were used to identify adults aged 18 or older with a diagnosis of CP. Each adult with CP was matched to three controls who were matched for age, sex and GP. In total, 1703 adults with CP and 5109 matched controls were included in the analysis. The mean baseline age of participants was 33.30 years (SD: 15.48 years) and 46.8% of the sample were female. PRIMARY OUTCOME: New diagnosis of dementia during the follow-up period (earliest date of 1987 to latest date of 2015). RESULTS: During the follow-up, 72 people were identified with a new diagnosis of dementia. The overall proportion of people with and without CP who developed dementia was similar (CP: n=19, 1.1%; matched controls n=54, 10.0%). The unadjusted HR suggested that people with CP had an increased hazard of being diagnosed with dementia when compared with matched controls (HR 2.69, 95% CI 1.44 to 5.00). This association was attenuated when CP comorbidities (sensory impairment, intellectual disability and epilepsy) were accounted for (HR 1.92, 95% CI 0.92 to 4.02). CONCLUSIONS: There was no difference in the proportion of people with CP and matched controls who were diagnosed with dementia during the follow-up. Furthermore, while there was evidence for an increased hazard of dementia among people with CP, the fact that this association was attenuated after controlling for comorbidities indicates that this association may be explained by comorbidities rather than being a direct result of CP. Findings should be interpreted with caution due to the low number of incident cases of dementia.


Assuntos
Paralisia Cerebral/epidemiologia , Demência/epidemiologia , Adulto , Idoso , Estudos de Coortes , Feminino , Medicina Geral , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos
18.
Front Rehabil Sci ; 2: 737384, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-36188762

RESUMO

Multiple wearable devices that purport to measure physical activity are widely available to consumers. While they may support increases in physical activity among people with multiple sclerosis (MS) by providing feedback on their performance, there is little information about the validity and acceptability of these devices. Providing devices that are perceived as inaccurate and difficult to use may have negative consequences for people with MS, rather than supporting participation in physical activity. The aim of this study was, therefore, to assess the validity and acceptability of commercially available devices for monitoring step-count and activity time among people with MS. Nineteen ambulatory adults with MS [mean (SD) age 52.1 (11.9) years] participated in the study. Step-count was assessed using five commercially available devices (Fitbit Alta, Fitbit Zip, Garmin Vivofit 4, Yamax Digi Walker SW200, and Letscom monitor) and an activPAL3µ while completing nine everyday activities. Step-count was also manually counted. Time in light activity, moderate-to-vigorous activity, and total activity were measured during activities using an Actigraph GT3X accelerometer. Of the 19 participants who completed the validity study, fifteen of these people also wore the five commercially available devices for three consecutive days each, and participated in a semi-structured interview regarding their perception of the acceptability of the monitors. Mean percentage error for step-count ranged from 12.1% for the Yamax SW200 to -112.3% for the Letscom. Mean step-count as manually determined differed to mean step-count measured by the Fitbit Alta (p = 0.002), Garmin vivofit 4 (p < 0.001), Letscom (p < 0.001) and the research standard device, the activPAL3µ (p < 0.001). However, 95% limits of agreement were smallest for the activPAL3µ and largest for the Fitbit Alta. Median percentage error for activity minutes was 52.9% for the Letscom and 100% for the Garmin Vivofit 4 and Fitbit Alta compared to minutes in total activity. Three inductive themes were generated from participant accounts: Interaction with device; The way the device looks and feels; Functionality. In conclusion, commercially available devices demonstrated poor criterion validity when measuring step-count and activity time in people with MS. This negatively affected the acceptability of devices, with perceived inaccuracies causing distrust and frustration. Additional considerations when designing devices for people with MS include an appropriately sized and lit display and ease of attaching and charging devices.

19.
Gut ; 70(1): 9-29, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33067334

RESUMO

The British Society of Gastroenterology in collaboration with British Association for the Study of the Liver has prepared this document. The aim of this guideline is to review and summarise the evidence that guides clinical diagnosis and management of ascites in patients with cirrhosis. Substantial advances have been made in this area since the publication of the last guideline in 2007. These guidelines are based on a comprehensive literature search and comprise systematic reviews in the key areas, including the diagnostic tests, diuretic use, therapeutic paracentesis, use of albumin, transjugular intrahepatic portosystemic stent shunt, spontaneous bacterial peritonitis and beta-blockers in patients with ascites. Where recent systematic reviews and meta-analysis are available, these have been updated with additional studies. In addition, the results of prospective and retrospective studies, evidence obtained from expert committee reports and, in some instances, reports from case series have been included. Where possible, judgement has been made on the quality of information used to generate the guidelines and the specific recommendations have been made according to the 'Grading of Recommendations Assessment, Development and Evaluation (GRADE)' system. These guidelines are intended to inform practising clinicians, and it is expected that these guidelines will be revised in 3 years' time.


Assuntos
Ascite/diagnóstico , Ascite/terapia , Cirrose Hepática/complicações , Ascite/etiologia , Humanos , Cirrose Hepática/patologia , Cirrose Hepática/terapia
20.
BMJ Open ; 10(12): e041425, 2020 12 22.
Artigo em Inglês | MEDLINE | ID: mdl-33371036

RESUMO

INTRODUCTION: The transition from child to adult health services is a challenging and complex process for young people with cerebral palsy (CP). Poorly managed transition is associated with deterioration in health, increased hospitalisations and reduced quality of life. While international research identifies key practices that can improve the experience and outcomes of transition, there is a paucity of data in the Irish context. This research study aims to gain an insight into the experience of transition for young people with CP in Ireland. METHODS AND ANALYSIS: A convergent parallel mixed-methods design will be used to collect, analyse and interpret quantitative and qualitative data. Participants will be young people aged 16-22 years with CP, their parent(s)/carer(s) and service providers. Quantitative and qualitative data will be collected through questionnaires and interviews, respectively. Quantitative data will be reported using descriptive statistics. Where sufficient data are collected, we will examine associations between the experience of transition practices and sociodemographic and CP-related factors, respectively, using appropriate regression models. Associations between service provider characteristics and provision of key transition practices may also be explored using appropriate regression models. Qualitative data will be analysed using the Framework Method. A coding matrix based on key transitional practices identified from the literature will be used to identify convergence and divergence across study components at the integration stage. ETHICS AND DISSEMINATION: The study has been approved by the RCSI University of Medicine and Health Sciences Research Ethics Committee (REC201911010). Results will be presented to non-academic stakeholders through a variety of knowledge translation activities. Results will be published in open access, peer-reviewed journals and presented at national and international scientific conferences.


Assuntos
Paralisia Cerebral , Transição para Assistência do Adulto , Adolescente , Adulto , Paralisia Cerebral/terapia , Criança , Humanos , Irlanda , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem
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