The association between disability and mortality: a mixed-methods study.

BACKGROUND: Globally, 1·3 billion people have a disability and are more likely to experience poor health than the general population. However, little is known about the mortality or life expectancy gaps experienced by people with disabilities. We aimed to undertake a systematic review and meta-analysis of the association between disability and mortality, compare these findings to the evidence on the association of impairment types and mortality, and model the estimated life expectancy gap experienced by people with disabilities. METHODS: We did a mixed-methods study, which included a systematic review and meta-analysis, umbrella review, and life expectancy modelling. For the systematic review and meta-analysis, we searched MEDLINE, Global Health, PsycINFO, and Embase for studies published in English between Jan 1, 2007, and June 7, 2023, investigating the association of mortality and disability. We included prospective and retrospective cohort studies and randomised controlled trials with a baseline assessment of disability and a longitudinal assessment of all-cause mortality or cause-specific mortality. Two reviewers independently assessed study eligibility, extracted the data, and assessed risk of bias. We did a random-effects meta-analysis to calculate a pooled estimate of the mortality rate ratio for people with disabilities compared with those without disabilities. We did an umbrella review of meta-analyses examining the association between different impairment types and mortality. We used life table modelling to translate the mortality rate ratio into an estimate of the life expectancy gap between people with disabilities and the general population. The systematic review and meta-analysis is registered with PROSPERO, CRD42023433374. FINDINGS: Our search identified 3731 articles, of which 42 studies were included in the systematic review. The meta-analysis included 31 studies. Pooled estimates showed that all-cause mortality was 2·24 times (95% CI 1·84-2·72) higher in people with disabilities than among people without disabilities, although heterogeneity between the studies was high (τ2=0·28, I2=100%). Modelling indicated a median gap in life expectancy of 13·8 years (95% CI 13·1-14·5) by disability status. Cause-specific mortality was also higher for people with disabilities, including for cancer, COVID-19, cardiovascular disease, and suicide. The umbrella review identified nine meta-analyses, which showed consistently elevated mortality rates among people with different impairment types. INTERPRETATION: Mortality inequities experienced by people with disabilities necessitate health system changes and efforts to address inclusion and the social determinants of health. FUNDING: National Institute for Health and Care Research, Rhodes Scholarship, Indonesia Endowment Funds for Education, Foreign, Commonwealth and Development Office (Programme for Evidence to Inform Disability Action), and the Arts and Humanities Research Council.

Building disability-inclusive health systems.

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.

Treating Older Children with Clubfoot: Results of a Cross-Sectional Survey of Expert Practitioners.

Treating clubfoot in walking-age children is debated, despite studies showing that using the Ponseti casting principles can correct the midfoot effectively. We aimed to explore techniques and approaches for the management of older children with clubfoot and identify consensus areas. A mixed-methods cross-sectional electronic survey on delayed-presenting clubfoot (DPC) was sent to 88 clubfoot practitioners (response rate 56.8%). We collected data on decision-making, casting, imaging, orthotics, surgery, recurrence, rehabilitation, multidisciplinary care, and contextual factors. The quantitative data were analysed using descriptive statistics. The qualitative data were analysed using conventional content analysis. Many respondents reported using the Pirani score and some used the PAVER score to aid deformity severity assessment and correctability. Respondents consistently applied the Ponseti casting principles with a stepwise approach. Respondents reported economic, social, and other contextual factors that influenced the timing of the treatment, the decision to treat a bilateral deformity simultaneously, and casting intervals. Differences were seen around orthotic usage and surgical approaches, such as the use of tibialis anterior tendon transfer following full correction. In summary, the survey identified consensus areas in the overall principles of management for older children with clubfoot and the implementation of the Ponseti principles. The results indicate these principles are well recognised as a multidisciplinary approach for older children with clubfoot and can be adapted well for different geographical and healthcare contexts.

Remote monitoring of clubfoot treatment with digital photographs in low resource settings: Is it accurate?

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.

De toda maneira tem que andar junto: ações intersetoriais entre saúde e educação para crianças vivendo com a síndrome congênita do vírus Zika / The need to act together in every way possible: inter-sector action in health and education for children living with the congenital Zika syndrome / De todas formas deben ir juntas de la mano: acciones intersectoriales entre salud y educación para niños que viven con el síndrome congénito del virus Zika

Resumo: Com base na experiência de um programa de intervenção para famílias de crianças com a síndrome congênita do vírus Zika, que inclui múltiplas deficiências, em uma instituição de educação, foram observados os desafios e conquistas encontrados com a entrada dessas famílias no sistema escolar. O objetivo deste artigo foi explorar os achados de pesquisa realizada após a conclusão de um programa de intervenção mediante entrevistas semiabertas com profissionais da instituição, e as possíveis contribuições para a construção das relações intersetoriais visando à inclusão escolar de crianças com deficiência. É possível constatar uma mudança provocada pelo programa na relação entre as famílias e os profissionais da instituição de educação; as famílias tiveram espaço para elaborar seus receios e discutir o papel da escola na vida de crianças com deficiência. Dessa forma, os profissionais passaram a vê-las em uma posição mais ativa. Acredita-se que esta experiência possa favorecer outros serviços e municípios que busquem a inclusão escolar de crianças e adolescentes com deficiência assim como sua inclusão social e de suas famílias.

Abstract: The experience with an intervention program conducted in an educational institution and targeted to families of children with congenital Zika syndrome, which includes multiple disabilities, revealed the challenges and strides with the entry of these families in the school system. This article aimed to explore the findings from a study conducted after the conclusion of an intervention program, using semi-open interviews with professional staff at the institution and the possible contributions towards establishing inter-sector relations aimed at school inclusion of children with disabilities. A change was seen, as a result of the program, in the relationship between the families and the professionals at the educational institution, whereby the families had room to voice their fears and discuss the school's role in the lives of their children with disabilities. The professionals thus came to see the families taking a more active stance. This experience can favor other services and municipalities that seek school inclusion for children and adolescents with disabilities, as well as their social inclusion and that of their families.

Resumen: A partir de la experiencia de un programa de intervención para familias de niños con el síndrome congénito del virus Zika, que incluye múltiples discapacidades, en una institución educativa se observaron los desafíos y logros que se consiguieron tras la entrada de esas familias en el sistema escolar. El objetivo de este artículo fue analizar los resultados de la investigación realizada, tras la conclusión de un programa de intervención, a través de entrevistas semiabiertas con profesionales de la institución, así como las posibles contribuciones en la construcción de relaciones intersectoriales, con el fin de la inclusión escolar de niños con discapacidad. Es posible observar el cambio provocado por el programa en la relación entre las familias y los profesionales de la institución educativa, debido a que las familias contaron con un espacio para exponer sus recelos y discutir el papel de la escuela en la vida de niños con discapacidad. De esta forma, los profesionales pasaron a ser vistos desde una posición más activa. Se cree que esta experiencia puede favorecer a otros servicios y municipios que busquen la inclusión escolar de niños y adolescentes con discapacidad, así como su inclusión social y la de sus familias.

A comparison of outcome measures used to report clubfoot treatment with the Ponseti method: results from a cohort in Harare, Zimbabwe.

BACKGROUND: There are various established scoring systems to assess the outcome of clubfoot treatment after correction with the Ponseti method. We used five measures to compare the results in a cohort of children followed up for between 3.5 to 5 years. METHODS: In January 2017 two experienced physiotherapists assessed children who had started treatment between 2011 and 2013 in one clinic in Harare, Zimbabwe. The length of time in treatment was documented. The Roye score, Bangla clubfoot assessment tool, the Assessing Clubfoot Treatment (ACT) tool, proportion of relapsed and of plantigrade feet were used to assess the outcome of treatment in the cohort. Inter-observer variation was calculated for the two physiotherapists. A comparative analysis of the entire cohort, the children who had completed casting and the children who completed more than two years of bracing was undertaken. Diagnostic accuracy was calculated for the five measures and compared to full clinical assessment (gold standard) and whether referral for further intervention was required for re-casting or surgical review. RESULTS: 31% (68/218) of the cohort attended for examination and were assessed. Of the children who were assessed, 24 (35%) had attended clinic reviews for 4-5 years, and 30 (44%) for less than 2 years. There was good inter-observer agreement between the two expert physiotherapists on all assessment tools. Overall success of treatment varied between 56 and 93% using the different outcome measures. The relapse assessment had the highest unnecessary referrals (19.1%), and the Roye score the highest proportion of missed referrals (22.7%). The ACT and Bangla score missed the fewest number of referrals (7.4%). The Bangla score demonstrated 79.2% (95%CI: 57.8-92.9%) sensitivity and 79.5% (95%CI: 64.7-90.2%) specificity and the ACT score had 79.2% (95%CI: 57.8-92.9%) sensitivity and 100% (95%CI: 92-100%) specificity in predicting the need for referral. CONCLUSION: At three to five years of follow up, the Ponseti method has a good success rate that improves if the child has completed casting and at least two years of bracing. The ACT score demonstrates good diagnostic accuracy for the need for referral for further intervention (specialist opinion or further casting). All tools demonstrated good reliability.

Indicators to assess the functionality of clubfoot clinics in low-resource settings: a Delphi consensus approach and pilot study.

Background: This study aims to determine the indicators for assessing the functionality of clubfoot clinics in a low-resource setting. Methods: The Delphi method was employed with experienced clubfoot practitioners in Africa to rate the importance of indicators of a good clubfoot clinic. The consistency among the participants was determined with the intraclass correlation coefficient. Indicators that achieved strong agreement (mean≥9 [SD <1.5]) were included in the final consensus definition. Based on the final consensus definition, a set of questions was developed to form the Functionality Assessment Clubfoot Clinic Tool (FACT). The FACT was used between February and July 2017 to assess the functionality of clinics in the Zimbabwe clubfoot programme. Results: A set of 10 indicators that includes components of five of the six building blocks of a health system-leadership, human resources, essential medical equipment, health information systems and service delivery-was produced. The most common needs identified in Zimbabwe clubfoot clinics were a standard treatment protocol, a process for surgical referrals and a process to monitor dropout of patients. Conclusions: Practitioners had good consistency in rating indicators. The consensus definition includes components of the World Health Organization building blocks of health systems. Useful information was obtained on how to improve the services in the Zimbabwe clubfoot programme.

What is a good result after clubfoot treatment? A Delphi-based consensus on success by regional clubfoot trainers from across Africa.

BACKGROUND: Congenital talipes equino-varus (CTEV), also known as clubfoot, is one of the most common congenital musculoskeletal malformations. Despite this, considerable variation exists in the measurement of deformity correction and outcome evaluation. This study aims to determine the criteria for successful clubfoot correction using the Ponseti technique in low resource settings through Africa. METHODS: Using the Delphi method, 18 experienced clubfoot practitioners and trainers from ten countries in Africa ranked the importance of 22 criteria to define an 'acceptable or good clubfoot correction' at the end of bracing with the Ponseti technique. A 10cm visual analogue scale was used. They repeated the rating with the results of the mean scores and standard deviation of the first test provided. The consistency among trainers was determined with the intra-class correlation coefficient (ICC). From the original 22 criteria, ten criteria with a mean score >7 and SD <2 were identified and were rated through a second Delphi round by 17 different clubfoot treatment trainers from 11 countries in Africa. The final definition consisted of all statements that achieved strong agreement, a mean score of >9 and SD<1.5. RESULTS: The consensus definition of a successfully treated clubfoot includes: (1) a plantigrade foot, (2) the ability to wear a normal shoe, (3) no pain, and (4) the parent is satisfied. Participants demonstrated good consistency in rating these final criteria (ICC 0.88; 0.74,0.97). CONCLUSIONS: The consistency of Ponseti technique trainers from Africa in rating criteria for a successful outcome of clubfoot management was good. The consensus definition includes basic physical assessment, footwear use, pain and parent satisfaction.

Results of clubfoot treatment after manipulation and casting using the Ponseti method: experience in Harare, Zimbabwe.

OBJECTIVES: The objective of this study was to evaluate the outcomes of the Ponseti manipulation and casting method for clubfoot in a tertiary hospital in Zimbabwe and explore predictors of these outcomes. METHODS: A cohort study included children with idiopathic clubfoot managed from 2011 to 2013 at Parirenyatwa Hospital. Demographic data, clinical features and treatment outcomes were extracted from clinic records. The primary outcome measure was the final Pirani score (clubfoot severity measure) after manipulation and casting. Secondary outcomes included change in Pirani score (pre-treatment to end of casting), number of casts for correction, proportion receiving tenotomy and proportion lost to follow up. RESULTS: A total of 218 children (337 feet) were eligible for inclusion. The median age at treatment was 8 months; 173 children (268 feet) completed casting treatment within the study period. The mean length of time for corrective treatment was 10.2 weeks (9.5-10.9 weeks). Of the 45 children who did not complete treatment, 28 were under treatment and 17 were lost to follow up. A Pirani score of 1 or less was achieved in 85% of feet. Mean Pirani score at presentation was 3.80 (SD 1.15) and post-treatment 0.80 (SD 0.56, P-value <0.0001). Severity of deformity and being male were associated with a higher (worse) final Pirani score. Severity and age over two were associated with an increase in the number of casts required to correct deformity. CONCLUSION: This case series demonstrates that the majority (80%+) of children with clubfoot can achieve a good outcome with the Ponseti manipulation and casting method.