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1.
Lancet Public Health ; 9(5): e316-e325, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38702096

RESUMO

Health systems often fail people with disabilities, which might contribute to their shorter life expectancy and poorer health outcomes than people without disabilities. This Review provides an overview of the existing evidence on health inequities faced by people with disabilities and describes existing approaches to making health systems disability inclusive. Our Review documents a broad range of health-care inequities for people with disabilities (eg, lower levels of cancer screening), which probably contribute towards health differentials. We identified 90 good practice examples that illustrate current strategies to reduce inequalities. Implementing such strategies could help to ensure that health systems can expect, accept, and connect people with disabilities worldwide, deliver on their right to health, and achieve health for all.


Assuntos
Pessoas com Deficiência , Humanos , Pessoas com Deficiência/estatística & dados numéricos , Disparidades em Assistência à Saúde , Atenção à Saúde/organização & administração
2.
EClinicalMedicine ; 67: 102361, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38169717

RESUMO

Background: Play is essential for the cognitive, social, and emotional development of all children. Disparities potentially exist in access to play for children with disabilities, and the extent of this inequity is unknown. Methods: Data from 212,194 children aged 2-4 years in 38 Low and Middle-Income Countries were collected in the UNICEF supported Multiple Indicator Cluster Survey (2017-2020). Disability was assessed by the Washington Group-Child Functioning Module. Logistic regression models were applied to investigate the relationship between disability and play opportunities, controlling for age, sex, and wealth status. Meta-analysis was used to pool the estimates (overall, and disaggregated by sex), with heterogeneity assessed by Cochran's Q test. Findings: Children with disabilities have approximately 9% fewer play opportunities than those without disabilities (adjusted RR [aRR] = 0.88, 95% CI = 0.82-0.93), and this varied across countries. Mongolia and Democratic Republic of São Tomé and Príncipe had the lowest likelihood of play opportunities for children with disabilities ((aRR = 0.26, 95% CI = 0.09-0.75; aRR = 0.46, 95% CI = 0.23-0.93, respectively). Moreover, children with disabilities are 17% less likely to be provided with opportunities to play with their mothers (aRR = 0.83, 95% CI: 0.73-0.93), which is further reduced for girls with disabilities (aRR = 0.74, 95% CI: 0.60-0.90) compared to their peers without disabilities. The associations varied by impairment type, and children with communication and learning impairments are less likely to have opportunities for play with aRR of 0.69 (95% CI: 0.60-0.79) and 0.78 (95% CI: 0.71-0.86), compared to those without disabilities, respectively. Interpretation: Children with disabilities are being left behind in their access to play and this is likely to have negative impacts on their overall development and well-being. Funding: HK and TS are funded by HK's NIHR Global Research Professorship (NIHR301621). SR is funded by a Rhodes Scholarship. This study was funded by the Programme for Evidence to Inform Disability Action (PENDA) grant from the UK Foreign, Commonwealth and Development Office.

3.
BMJ Open ; 13(9): e069359, 2023 09 19.
Artigo em Inglês | MEDLINE | ID: mdl-37730409

RESUMO

INTRODUCTION: Evidence gaps limit management of small and/or nutritionally at-risk infants under 6 months and their mothers, who are at higher risk of death, illness, malnutrition and poor growth and development. These infants may be low birth weight, wasted, stunted and/or underweight. An integrated care model to guide their management (MAMI Care Pathway) is being tested in a randomised controlled trial in Ethiopia. Evaluating the extent to which an innovation is consistent with national policies and priorities will aid evidence uptake and plan for scale. METHODS AND ANALYSIS: This review will evaluate the extent to which the MAMI Care Pathway is consistent with national policies that relate to the care of at-risk infants under 6 months and their mothers in Ethiopia. The objectives are to describe the range and characteristics, concepts, strategic interventions, coherence and alignment of existing policies and identify opportunities and gaps. It will be conducted in accordance with the JBI methodology for scoping reviews (PRISMA-ScR). Eligible documents include infant and maternal health, nutrition, child development, food and social welfare-related policies publicly available in English and Amharic. The protocol was registered on the Open Science Framework Registry on 20 June 2022 (https://osf.io/m4jt6).Grey literature will be identified through government and agency websites, national and subnational contacts and Google Scholar, and published policies through electronic database searches (MEDLINE, EMBASE and Global and Health Information). The searches will take place between October 2023 and March 2024. A standardised data extraction tool will be used. Descriptive analysis of data will be undertaken. Data will be mapped visually and tabulated. Results will be described in narrative form. National stakeholder discussions will inform conclusions and recommendations. ETHICS AND DISSEMINATION: Ethical approval is not required as data consist solely of publicly available material. Findings will be used to evidence national and international policy and practice.


Assuntos
Mães , Política Pública , Criança , Feminino , Humanos , Lactente , Etiópia , Desenvolvimento Infantil , Procedimentos Clínicos , Ensaios Clínicos Controlados Aleatórios como Assunto , Revisões Sistemáticas como Assunto , Literatura de Revisão como Assunto
4.
BMJ Open ; 13(9): e074217, 2023 09 28.
Artigo em Inglês | MEDLINE | ID: mdl-37770271

RESUMO

INTRODUCTION: On average, people with disabilities face many difficulties in accessing healthcare and experience worse health outcomes. Yet, evidence on how to overcome these barriers is lacking. Participatory approaches are gaining prominence as they can generate low-cost, appropriate and scalable solutions. This study protocol is for the pilot testing of the co-created Participatory Learning and Action for Disability (PLA-D) groups to assess feasibility. METHODS AND ANALYSIS: We will pilot test PLA-D in five groups in Luuka district, Uganda during 2023. Each group will include approximately 20 members (people with disabilities, family members, carers) who will meet every 2-3 weeks over a 9-11 month period. The groups, guided by a trained facilitator, will identify issues about health and healthcare access and plan and implement locally generated solutions (eg, raising awareness of rights, advocacy and lobbying, establishing health savings and financing schemes). We will collect diverse sources of data to assess feasibility: (1) in-depth interviews and focus group discussions with group participants, non-participants and group facilitators; (2) monitoring of group activities; (3) direct observation of groups and (4) quantitative survey of group participants at baseline and endline. Data analyses will be undertaken to assess feasibility in terms of: acceptability, demand, implementation and practicality. We will develop and refine evaluation tools in preparation for a future trial. ETHICS AND DISSEMINATION: Ethical approval for the study has been received by the London School of Hygiene & Tropical Medicine and the Uganda Virus Research Institute ethics committees. Informed consent will be obtained from all study participants, making adaptations for people with disabilities as necessary. We will reach different groups for our dissemination activities, including (1) people with disabilities (eg, community meetings); (2) policy and programme stakeholders in Uganda and international (eg, individual meetings, evidence briefs) and (3) academics (journal articles, conference/seminar presentations).


Assuntos
Pessoas com Deficiência , Deficiências da Aprendizagem , Humanos , Projetos Piloto , Uganda , Acessibilidade aos Serviços de Saúde , Poliésteres
6.
Disabil Rehabil ; 45(19): 3155-3159, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36066022

RESUMO

PURPOSE: This commentary examines the provisions for early childhood development (ECD) in the global action plan for rehabilitation published by the World Health Organisation (WHO) within the context of the United Nations' Sustainable Development Goal (SDG) for inclusive education. METHODS: The meeting reports of the WHO Rehabilitation 2030 for 2017 and 2019 and the related documents were reviewed along with ECD policy documents from WHO, UNICEF, UNESCO, and the World Bank. RESULTS: The importance of a life-course approach to rehabilitation for the health and wellbeing of persons with disabilities was highlighted in the Rehabilitation 2030. However, the critical and foundational role of rehabilitation in ECD for children with disabilities to facilitate inclusive education, especially in low- and middle-income countries as envisioned by the SDG 4.2, was not clearly addressed. Children under 5 years with developmental delays and disabilities who are not developmentally on track in health and psychosocial wellbeing require timely rehabilitation to ensure that they benefit from inclusive education. CONCLUSIONS: The culture and practice of rehabilitation should be nurtured from infancy as an indispensable component of ECD to adequately prepare children with developmental disabilities for inclusive education and ensure effective rehabilitation services over the life course. IMPLICATIONS FOR REHABILITATIONRehabilitation is an integral and critical component of early childhood development to optimise school readiness for children with developmental disabilities.Routine newborn screening, developmental assessment, and surveillance of children from birth are foundational to any effective rehabilitation in early childhood.Global investment to promote and support rehabilitation services from early childhood within the health systems and across all levels of service delivery including community settings is warranted to achieve the sustainable development goals for children with disabilities.


Assuntos
Pessoas com Deficiência , Criança , Recém-Nascido , Pré-Escolar , Humanos , Pessoas com Deficiência/reabilitação , Desenvolvimento Infantil , Organização Mundial da Saúde , Nações Unidas , Desenvolvimento Sustentável
7.
Front Public Health ; 10: 894546, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36091559

RESUMO

Objective: Children with developmental disabilities are associated with a high risk of poor school enrollment and educational attainment without timely and appropriate support. Epidemiological data on cerebral palsy and associated comorbidities required for policy intervention in global health are lacking. This paper set out to report the best available evidence on the global and regional prevalence of cerebral palsy (CP) and developmental intellectual disability and the associated "years lived with disability" (YLDs) among children under 5 years of age in 2019. Methods: We analyzed the collaborative 2019 Rehabilitation Database of the Global Burden of Disease (GBD) Study and World Health Organization for neurological and mental disorders available for 204 countries and territories. Point prevalence and YLDs with 95% uncertainty intervals (UI) are presented. Results: Globally, 8.1 million (7.1-9.2) or 1.2% of children under 5 years are estimated to have CP with 16.1 million (11.5-21.0) or 2.4% having intellectual disability. Over 98% resided in low-income and middle-income countries (LMICs). CP and intellectual disability accounted for 6.5% and 4.5% of the aggregate YLDs from all causes of adverse health outcomes respectively. African Region recorded the highest prevalence of CP (1.6%) while South-East Asia Region had the highest prevalence of intellectual disability. The top 10 countries accounted for 57.2% of the global prevalence of CP and 62.0% of the global prevalence of intellectual disability. Conclusion: Based on this Database, CP and intellectual disability are highly prevalent and associated with substantial YLDs among children under 5 years worldwide. Universal early detection and support services are warranted, particularly in LMICs to optimize school readiness for these children toward inclusive education as envisioned by the United Nations' Sustainable Development Goals.


Assuntos
Paralisia Cerebral , Pessoas com Deficiência , Deficiência Intelectual , Criança , Pré-Escolar , Carga Global da Doença , Humanos , Deficiência Intelectual/epidemiologia , Organização Mundial da Saúde
8.
Wellcome Open Res ; 7: 77, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35651695

RESUMO

Background: The 2015-16 Zika epidemic resulted in thousands of children born with congenital Zika syndrome (CZS). In Brazil, gaps in the health system often caused parents to be left with insufficient information and support. Consequently, we developed and piloted Juntos - a participatory support programme which aims to improve knowledge, capacities and build support networks for caregivers of children with CZS.   Methods: Six caregiver groups received the programme between August 2017 and June 2018: three in Rio de Janeiro and three in Bahia. We assessed the feasibility of Juntos against six of the eight areas of a feasibility framework described by Bowen et al. to consider whether Juntos 'could work'. These areas were: acceptability, demand, implementation, practicality, adaptation and limited efficacy. We used mixed methods including: 1) baseline and end-line questionnaires completed by all group participants; 2) in-depth interviews with 18 participants, seven facilitators and three key stakeholders; 3) participant focus group discussions after each session; 4) researchers session observation; and 5) recording programme costs.  Results: 37/48 (77%) enrolled families completed both questionnaires. Acceptability and demand were noted as high, based on participant responses to interview questions, focus group feedback and satisfaction scores. Potential for implementation and practicality were also demonstrated through interviews with facilitators and key stakeholders and analysis of project documents. Two groups included caregivers of children with non-Zika related developmental disabilities, showing potential for adaptability. Self-reported quality of life scores increased in caregivers between baseline and end-line, as did the dimensions of family relationships and daily activities in the Pediatric Quality of Life Inventory (PEDS QL) Family Impact Module, showing limited efficacy.   Conclusions: The programme showed feasibility according to Bowen's framework. However, further research of scale up, particularly in the areas of integration, expansion and limited efficacy are needed to ascertain if the programme is effective.

9.
Afr J Disabil ; 11: 990, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35747757

RESUMO

Background: On average, people with disabilities have greater healthcare needs, yet face a range of barriers in accessing care. Objectives: Our objectives were to explore the experiences of people with disabilities in accessing care and identify opportunities for the health system to be designed for inclusion in Zimbabwe. Methods: In-depth qualitative interviews were conducted between May and June 2021 with 24 people with disabilities (identified through purposive sampling) and with 10 key informants from local and national health authorities (identified through expert recommendations). Interviews explored the experience of accessing healthcare prior to the coronavirus disease 2019 (COVID-19) pandemic. Interviews were transcribed, coded and thematically analysed. We used the disability-inclusive health 'Missing Billion' framework to map and inform barriers to inclusive healthcare and disparities in outcomes faced by people with disabilities. Results: People with disabilities experienced difficulties accessing health services in Zimbabwe prior to COVID-19. These experiences were shaped by health literacy, self-stigma and affordability of services, which limited demand. Supply of health services was constrained by the perceived poor capacity of health workers to treat people with disabilities and discrimination. Inclusion was facilitated by clinic staff support of people with disabilities' access to medication through referral to mission hospitals and private clinics, and the lobbying of organisations of people with disabilities. Conclusion: Strategies to promote disability inclusion in healthcare include meaningfully engaging people with disabilities, investing in organisations of people with disabilities, protecting funding for disability inclusion, collecting and analysing disability-disaggregated data and strengthening a twin-track approach to health service provision.

10.
Afr J Disabil ; 11: 991, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35747759

RESUMO

Background: People with disabilities are at higher risk of adverse coronavirus disease 2019 (COVID-19) outcomes. Additionally, measures to mitigate COVID-19 transmission have impacted health service provision and access, which may particularly disadvantage people with disabilities. Objectives: To explore the perspectives and experiences of people with disabilities in accessing health services in Zimbabwe during the pandemic, to identify perceived challenges and facilitators to inclusive health and key actions to improve accessibility. Methods: We used in-depth interviews with 24 people with disabilities (identified through purposive sampling) and with 10 key informants (from expert recommendation) to explore the impact of COVID-19 on access to health care. Interviews were transcribed, coded and thematically analysed. We used the disability-inclusive health 'Missing Billion' framework to map and inform barriers to inclusive health care during COVID-19 and disparities in outcomes faced by people with disabilities. Results: People with disabilities demonstrated good awareness of COVID-19 mitigation strategies, but faced difficulties accessing COVID-19 information and health services. Challenges to the implementation of COVID-19 guidelines related to a person's functional impairment and financial ability to do so. A key supply-side constraint was the perceived de-prioritisation of rehabilitation services. Further restrictions on access to health services and rehabilitation decreased an individual's functional ability and exacerbated pre-existing conditions. Conclusion: The immediate health and financial impacts of the COVID-19 pandemic on people with disabilities in Zimbabwe were severe. Government departments should include people with disabilities in all communications and activities related to the pandemic through a twin-track approach, meaning inclusion in mainstream activities and targeting with specific interventions where necessary.

11.
BMJ Open ; 11(11): e049988, 2021 11 25.
Artigo em Inglês | MEDLINE | ID: mdl-34824111

RESUMO

OBJECTIVES: To explore the opportunities and challenges within the health system to facilitate the achievement of universal health coverage (UHC) for people with stroke (PWS) in South Africa (SA). SETTING: SA. DESIGN: Scoping review. SEARCH METHODS: We conducted a scoping review of opportunities and challenges to achieve UHC for PWS in SA. Global and Africa-specific databases and grey literature were searched in July 2020. We included studies of all designs that described the healthcare system for PWS. Two frameworks, the Health Systems Dynamics Framework and WHO Framework, were used to map data on governance and regulation, resources, service delivery, context, reorientation of care and community engagement. A narrative approach was used to synthesise results. RESULTS: Fifty-nine articles were included in the review. Over half (n=31, 52.5%) were conducted in Western Cape province and most (n=41, 69.4%) were conducted in urban areas. Studies evaluated a diverse range of health system categories and various outcomes. The most common reported component was service delivery (n=46, 77.9%), and only four studies (6.7%) evaluated governance and regulation. Service delivery factors for stroke care were frequently reported as poor and compounded by context-related limiting factors. Governance and regulations for stroke care in terms of government support, investment in policy, treatment guidelines, resource distribution and commitment to evidence-based solutions were limited. Promising supporting factors included adequately equipped and staffed urban tertiary facilities, the emergence of Stroke units, prompt assessment by health professionals, positive staff attitudes and care, two clinical care guidelines and educational and information resources being available. CONCLUSION: This review fills a gap in the literature by providing the range of opportunities and challenges to achieve health for all PWS in SA. It highlights some health system areas that show encouraging trends to improve service delivery including comprehensiveness, quality and perceptions of care.


Assuntos
Acidente Vascular Cerebral , Cobertura Universal do Seguro de Saúde , Atenção à Saúde , Programas Governamentais , Humanos , África do Sul , Acidente Vascular Cerebral/terapia
12.
BMJ Open ; 10(10): e041221, 2020 10 12.
Artigo em Inglês | MEDLINE | ID: mdl-33046479

RESUMO

INTRODUCTION: Stroke is the second most common cause of death after HIV/AIDS and a significant health burden in South Africa. The extent to which universal health coverage (UHC) is achieved for people with stroke in South Africa is unknown. Therefore, a scoping review to explore the opportunities and challenges within the South African health system to facilitate the achievement of UHC for people with stroke is warranted. METHODS AND ANALYSIS: The scoping review will follow the approach recommended by Levac, Colquhoun and O'Brien, which includes five steps: (1) identifying the research question, (2) identifying relevant studies, (3) selecting the studies, (4) charting the data, and (5) collating, summarising and reporting the results. Health Systems Dynamics Framework and WHO Framework on integrated people-centred health services will be used to map, synthesise and analyse data thematically. ETHICS AND DISSEMINATION: Ethical approval is not required for this scoping review, as it will only include published and publicly available data. The findings of this review will be published in an open-access, peer-reviewed journal and we will develop an accessible summary of the results for website posting and stakeholder meetings.


Assuntos
Acidente Vascular Cerebral , Cobertura Universal do Seguro de Saúde , Programas Governamentais , Humanos , Assistência Médica , Literatura de Revisão como Assunto , África do Sul , Acidente Vascular Cerebral/terapia
13.
PLoS One ; 15(9): e0238850, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32913354

RESUMO

BACKGROUND: The Zika virus outbreak in Brazil (2015-2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families. OBJECTIVE: This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil. METHODS: Four facilitators were trained to deliver the 10-week intervention called "Juntos". Two were mothers of a child with CZS ("expert mothers") and two were therapists (speech therapist and physiotherapist). The intervention was delivered to three groups, generally including 8-10 caregivers. Two researchers, who were psychologists, observed the groups and held focus group discussions at the end of each session. They undertook semi-structured interviews post intervention with a purposive sample of caregivers, and with the facilitators. Observation notes were collated and summarised. Transcripts were transcribed and thematically analysed using five elements to assess feasibility: acceptability, demand, implementation, practicality and adaptation. RESULTS: The use of expert mothers as facilitators was considered to be acceptable and there was demand for their role. Their experiential knowledge was viewed as important for sharing and learning, and supporting and encouraging the group. The intervention was delivered with fidelity by the expert mothers. The practicality of the intervention was facilitated by holding the group sessions in the community, providing transport costs to facilitators and participants, paying expert mothers and therapist facilitators equally and supporting the expert mothers through a mentorship programme. Equal payment with the therapist enabled the expert mothers to better facilitate the groups, through increased confidence in the value of their role. Adaptation of the intervention included development of video resources and mentoring guidelines. CONCLUSION: The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible in similar contexts.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Mães/psicologia , Pais/psicologia , Infecção por Zika virus/congênito , Infecção por Zika virus/psicologia , Zika virus/isolamento & purificação , Brasil/epidemiologia , Criança , Estudos de Viabilidade , Feminino , Processos Grupais , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida , Infecção por Zika virus/epidemiologia
14.
Pediatrics ; 146(1)2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32554521

RESUMO

BACKGROUND: Estimates of children and adolescents with disabilities worldwide are needed to inform global intervention under the disability-inclusive provisions of the Sustainable Development Goals. We sought to update the most widely reported estimate of 93 million children <15 years with disabilities from the Global Burden of Disease Study 2004. METHODS: We analyzed Global Burden of Disease Study 2017 data on the prevalence of childhood epilepsy, intellectual disability, and vision or hearing loss and on years lived with disability (YLD) derived from systematic reviews, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Point estimates of the prevalence and YLD and the 95% uncertainty intervals (UIs) around the estimates were assessed. RESULTS: Globally, 291.2 million (11.2%) of the 2.6 billion children and adolescents (95% UI: 249.9-335.4 million) were estimated to have 1 of the 4 specified disabilities in 2017. The prevalence of these disabilities increased with age from 6.1% among children aged <1 year to 13.9% among adolescents aged 15 to 19 years. A total of 275.2 million (94.5%) lived in low- and middle-income countries, predominantly in South Asia and sub-Saharan Africa. The top 10 countries accounted for 62.3% of all children and adolescents with disabilities. These disabilities accounted for 28.9 million YLD or 19.9% of the overall 145.3 million (95% UI: 106.9-189.7) YLD from all causes among children and adolescents. CONCLUSIONS: The number of children and adolescents with these 4 disabilities is far higher than the 2004 estimate, increases from infancy to adolescence, and accounts for a substantial proportion of all-cause YLD.


Assuntos
Cegueira/epidemiologia , Epilepsia/epidemiologia , Carga Global da Doença/estatística & dados numéricos , Perda Auditiva/epidemiologia , Deficiência Intelectual/epidemiologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Prevalência , Adulto Jovem
15.
Artigo em Inglês | MEDLINE | ID: mdl-32438700

RESUMO

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.


Assuntos
Necessidades e Demandas de Serviços de Saúde , Infecção por Zika virus , Zika virus , Brasil , Criança , Estudos Transversais , Saúde da Família , Feminino , Humanos , Índia , Lactente , Recém-Nascido , Masculino , Qualidade de Vida , Adulto Jovem , Infecção por Zika virus/congênito
16.
PLoS One ; 15(5): e0232878, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32413066

RESUMO

BACKGROUND: Clinical examination and functional assessment are often the first steps to assess outcome of clubfoot treatment. Clinical photographs may be an adjunct used to assess treatment outcomes in lower resourced settings where physical review by a specialist is limited. We aimed to evaluate the diagnostic performance of photographic images of patients with clubfoot in assessing outcome following treatment. METHODS: In this single-centre diagnostic accuracy study, we included all children with clubfoot from a cohort treated between 2011 and 2013, in 2017. Two physiotherapists trained in clubfoot management calculated the Assessing Clubfoot Treatment (ACT) score for each child to decide if treatment was successful or if further treatment was required. Photographic images were then taken of 79 feet. Two blinded orthopaedic surgeons assessed three sets of images of each foot (n = 237 in total) at two time points (two months apart). Treatment for each foot was rated as 'success', 'borderline' or 'failure'. Intra- and inter-observer variation for the photographic image was assessed. Sensitivity, specificity, positive and negative predictive values were calculated for the photographic image compared to the ACT score. RESULTS: There was perfect correlation between clinical assessment and photographic evaluation of both raters at both time-points in 38 (48%) feet. The raters demonstrated acceptable reliability with re-scoring photographs (rater 1, k = 0.55; rater 2, k = 0.88). Thirty percent (n = 71) of photographs were assessed as poor quality image or sub-optimal patient position. Sensitivity of outcome with photograph compared to ACT score was 83.3%-88.3% and specificity ranged from 57.9%-73.3%. CONCLUSION: Digital photography may help to confirm, but not exclude, success of clubfoot treatment. Future work to establish photographic parameters as an adjunct to assessing treatment outcomes, and guidance on a standardised protocol for photographs, may be beneficial in the follow up of children who have treated clubfoot in isolated communities or lower resourced settings.


Assuntos
Pé Torto Equinovaro/diagnóstico , Pé Torto Equinovaro/terapia , Fotografação , Telemedicina , Criança , Pé Torto Equinovaro/economia , Estudos de Coortes , Feminino , Humanos , Masculino , Variações Dependentes do Observador , Procedimentos Ortopédicos , Fotografação/economia , Fotografação/métodos , Fisioterapeutas , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Telemedicina/economia , Telemedicina/métodos , Resultado do Tratamento
17.
Wellcome Open Res ; 4: 80, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31289753

RESUMO

The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services. This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers. The research project contains four components: Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study.Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts.Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador.Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.

18.
BMC Musculoskelet Disord ; 18(1): 453, 2017 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-29141609

RESUMO

BACKGROUND: Clubfoot is one of the most common congenital deformities affecting mobility. It leads to pain and disability if untreated. The Ponseti method is widely used for the correction of clubfoot. There is variation in how the result of clubfoot management is measured and reported. This review aims to determine and evaluate how success with the Ponseti method is reported in sub-Saharan Africa. METHODS: Five databases were examined in August 2017 for studies that met the inclusion criteria of: (1) evaluation of the effect of clubfoot management; (2) use of the Ponseti method; (3) original study undertaken in sub-Saharan Africa; (4) published between 2000 and 2017. We used the PRISMA statement to report the scope of studies. The included studies were categorised according to a hierarchy of study methodologies and a 27-item quality measure identified methodological strengths and weaknesses. The definition of success was based on the primary outcome reported. RESULTS: Seventy-seven articles were identified by the search. Twenty-two articles met the inclusion criteria, of which 14 (64%) reported a primary outcome. Outcomes were predominantly reported though case series and the quality of evidence was low. Clinical assessment was the most commonly reported outcome measure and few studies reported long-term outcome. The literature available to assess success of clubfoot management is characterised by a lack of standardisation of outcomes, with different measures reporting success in 68% to 98% of cases. CONCLUSION: We found variation in the criteria used to define success resulting in a wide range of results. There is need for an agreed definition of good outcome (successful management) following both the correction and the bracing phases of the Ponseti method to establish standards to monitor and evaluate service delivery.


Assuntos
Pé Torto Equinovaro/terapia , África Subsaariana , Humanos , Resultado do Tratamento
19.
Trans R Soc Trop Med Hyg ; 111(11): 512-519, 2017 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-29425343

RESUMO

Background: Musculoskeletal impairments (MSI) are the leading contributor to global years lived with disability. Comparable epidemiological data on MSI is lacking, and are needed to inform health and rehabilitative services. This study aimed to estimate the prevalence and causes of MSI in Telangana State, India. Method: A population-based survey used probability proportionate to size and compact-segment sampling to select 51 clusters of 80 individuals (all ages). Participants were screened using seven questions and any participant who screened positive underwent standardized examination by a physiotherapist for MSI presence, severity and diagnosis. Data were also collected on vision and hearing impairment, depression and self-reported difficulties with physical functioning. Results: The prevalence of MSI was 19.6% (95% CI: 16.7-22.8%) and this increased with age. The majority (82%; 574/699) of MSI was classified as mild, 11% as moderate and 7% as severe. Over half (57%) of MSI diagnoses were acquired non-traumatic causes, with degenerative joint disease being the most common. There was a high unmet need for physiotherapy services (3% attended vs. 40% recommended). One-fifth (21%) of MSI cases also had at least one of vision (10%) or hearing (11%) impairment or depression (3%). Conclusions: MSI is common among persons living in Mahabubnagar District, particularly older adults. These estimates can inform public health initiatives for the planning of health and rehabilitation services.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Artropatias/epidemiologia , Doenças Musculoesqueléticas/epidemiologia , Doenças Musculoesqueléticas/etiologia , Modalidades de Fisioterapia , Ferimentos e Lesões/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Estudos Transversais , Atenção à Saúde/organização & administração , Pessoas com Deficiência/reabilitação , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Índia/epidemiologia , Lactente , Recém-Nascido , Artropatias/complicações , Artropatias/reabilitação , Masculino , Pessoa de Meia-Idade , Doenças Musculoesqueléticas/reabilitação , Doenças Musculoesqueléticas/terapia , Modalidades de Fisioterapia/organização & administração , Modalidades de Fisioterapia/estatística & dados numéricos , Vigilância da População , Prevalência , Autorrelato , Ferimentos e Lesões/complicações , Ferimentos e Lesões/reabilitação , Adulto Jovem
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