Identification of childhood disability in Jamaica: the ten question screen.

This is the first in a series of papers that report the testing of two instruments for the identification and assessment of childhood disability by community workers (CWs) in Third World countries. It is part of the International Epidemiologic Study on Childhood Disability. The Ten Question Screen (TQ) was used as the main instrument to identify disability in a two stage population-based survey of 5478 children aged 2-9 years in Clarendon, Jamaica. In the second stage, TQ positive and 8% of the screen negative controls were professionally assessed by a doctor and a psychologist using standard criteria based on the main classification system of the ICIDH. Sensitivity of the TQ as a whole varied in different strata of the group and amongst different disabilities, from perfect in girls under 6 years, fits and motor disabilities and for serious disability in all group except boys over 5 years with cognitive disability. Specificity was good but the false positive rate was unacceptably high at 74%. It was concluded, firstly, that the validation of a simple questionnaire of perceptions of behaviour against objective measurements of impairments was perhaps not fair to the TQ. In spite of this, the TQ would be a very useful instrument in collecting disability data or for identifying people in need of rehabilitation help, if a way of reducing false positives could be found.     

Population-based survey of childhood disability in eastern Jeddah using the ten questions tool

Purpose: To identify the prevalence of handicapping disabilities among children up to 15 years of age and their epidemiological pattern in the eastern part of Jeddah. Methods: In a population-based cross-sectional household survey in the eastern Jeddah area, Saudi Arabia, a multistage sampling method was applied to screen children in 875 houses using the ten questions survey tool for identification of disabilities. Further information collected for detected disabilities included possible risk factors, cause of the disability as perceived by the family and services previously provided to the child. Results: A total of 137 cases of disability were detected giving a point prevalence rate of 36.7 per 1000 children. Twenty-nine children (21.2%) were discovered for the first time during the survey. The majority of cases were male (57.7%) and the mean age for all cases was 10 years (SD = 5.5) with no case detected under one year of age. Disabled children were in the fourth or fifth birth order among their brothers and sisters and 47 (34%) of them were recorded as a second or third disability in the same family. Number of disabilities in the same child varied widely: 59% of cases had a single disability, 22% had two conditions and 19% had three or more conditions. Speech, motor and mental disabilities ranked top of the disabilities detected by the ten-question tool. The commonest cause of these disabilities as perceived by the family was hereditary diseases followed by childhood illnesses. Significant risk factors associated to these conditions included larger number of children in the family, older age of either parent, histories of handicapping conditions in the original families of either of the parents and presence of handicapping condition in the mothers. Families reported lack of services provided to their disabled children in the community. Conclusions: The survey tool managed to document, successfully, a prevalence rate of childhood disabilities in the community with a general picture of their types and suspected causes which is quite comparable to that found in Saudi Arabia. It also reported a low service delivery for these disabilities and identified some risk factors related to their occurrence. It is recommended to apply this survey method with certain modifications to suit the local culture in Saudi Arabia. Improvement of the services rendered to handicapped children in Jeddah is also recommended.     

Population-based survey of childhood disability in Eastern Jeddah using the ten questions tool

Purpose : To identify the prevalence of handicapping disabilities among children up to 15 years of age and their epidemiological pattern in the eastern part of Jeddah. Methods : In a population-based cross-sectional household survey in the eastern Jeddah area, Saudi Arabia, a multistage sampling method was applied to screen children in 875 houses using the ten questions survey tool for identification of disabilities. Further information collected for detected disabilities included possible risk factors, cause of the disability as perceived by the family and services previously provided to the child. Results : A total of 137 cases of disability were detected giving a point prevalence rate of 36.7 per 1000 children. Twenty-nine children (21.2%) were discovered for the first time during the survey. The majority of cases were male (57.7%) and the mean age for all cases was 10 years (SD = 5.5) with no case detected under one year of age. Disabled children were in the fourth or fifth birth order among their brothers and sisters and 47 (34%) of them were recorded as a second or third disability in the same family. Number of disabilities in the same child varied widely: 59% of cases had a single disability, 22% had two conditions and 19% had three or more conditions. Speech, motor and mental disabilities ranked top of the disabilities detected by the ten-question tool. The commonest cause of these disabilities as perceived by the family was hereditary diseases followed by childhood illnesses. Significant risk factors associated to these conditions included larger number of children in the family, older age of either parent, histories of handicapping conditions in the original families of either of the parents and presence of handicapping condition in the mothers. Families reported lack of services provided to their disabled children in the community. Conclusions : The survey tool managed to document, successfully, a prevalence rate of childhood disabilities in the community with a general picture of their types and suspected causes which is quite comparable to that found in Saudi Arabia. It also reported a low service delivery for these disabilities and identified some risk factors related to their occurrence. It is recommended to apply this survey method with certain modifications to suit the local culture in Saudi Arabia. Improvement of the services rendered to handicapped children in Jeddah is also recommended.     

Parent evaluation of community based rehabilitation in Jamaica.

Much may be gained by intervening early in the lives of disabled children. While children may benefit from making developmental progress, early intervention may also help improve parental understanding, acceptance, competence, parental understanding, acceptance, competence, parent-child interactions, and overall integration into community services. Advocates also indicate their preference for direct parental involvement in teaching in home-based programs. The nongovernmental organization, 3D Projects, offers community-based rehabilitation services to more than 300 disabled children in rural south-central Jamaica. The parents of all clients receiving home-based services were interviewed to help assess the projects' impact. Home visits were much appreciated, with respondents especially in favor of the semi-academic and physical exercises. Respondents felt that they were quite involved in the training of their children. 92% were able to say which disability afflicts their child. While no baseline data were taken for this study, this degree of knowledge is significantly higher than that found in samples of individuals from comparable studies. 50% desired additional information related to their child's schooling, behavior, and speech and learning problems. More parental education is therefore warranted. 67% stated that the program has increased their sensitivity and concern for their children, 76% felt that the condition of their child is improving, and 93% generally felt positive about the program and would recommend it to other parents.     

Early prevention of childhood disability in developing countries.

The concept of prevention, while implicit in most early intervention efforts, has not been comprehensively articulated as a basis for conceptualizing early intervention services. The growing recognition of the importance of early identification and intervention for infants and young children, and involvement of the family, are factors which contribute to conceptualizations of services which are preventive in nature. This recognition parallels broader concerns for family support programmes which have a preventive focus and seek to enhance the development of children and families. The purpose of this paper is to present a comprehensive framework for the provision of child and family service by conceptualizing early intervention in terms of levels of prevention. Specifically, the concept of primary, secondary, and tertiary levels of prevention will be presented as a framework suitable to encompass the preventive function of community based rehabilitation. The relevance of early prevention is based on the premise that the condition of childhood disability can be prevented at primary, secondary, and tertiary levels. Viewed in this way, the problem or condition of developmental delay or disability in children can be addressed at each of the three levels to effect a reduction of its expression, its duration or extended impact. Primary, secondary, and tertiary prevention can be implemented in the context of community based rehabilitation to address these goals: (a) enhance development and minimize the potential for delay; (b) minimize the need for special education and related services; and (c) minimize the likelihood of institutional or other restrictive care outcomes.     

Television programming and disability: a ten year span

Television programming covering disability over a ten year span, 1967-68 and 1977-78, was studied to determine similarities and differences. Variables identified for comparisons included network, program type, disability, time slot, and length of programming. The largest frequency of programs occurred on NBC in 1968. However, in 1978 the largest frequency occurred on the Public Broadcasting System. This can be partially explained by the increased numbers of programs on PBS overall and their traditional concern with public interest and service programming. The commercial networks historically have been in the business of entertaining and portray disability more so in that fashion. Movies head the list in 1968. However, in 1978, dramatic series and children's programming head the list followed by news documentaries and telethon. Paraplegia was the most frequent disability portrayed in 1968 followed by mental illness, drug addiction and emotional disability. In 1978 mental illness headed the list followed by alcoholism, emotional disability and physically handicapped. Paraplegia in 1968 can be accounted for by the program "Ironside" that featured a paraplegic detective. Mental illness and emotional disturbance seem to be consistent targets over the decade for popular programming in prime time.     

Categories, classes and criteria in childhood disability--experience from a survey in Jamaica.

This paper reports a new classification and criteria for disabilities and handicaps used in a survey of childhood disability in Jamaica. Part of the International Classification of Impairments, Disabilities and Handicaps was used, with an alternative classification for disabilities similar to that of impairment, and with a complete set of criteria for levels of severity. For handicaps, the set proposed in the WHO manual, Training Disabled People in the Community, was used. No difficulties were encountered in the use of definitions or severity criteria. The inter-rater reliability for disability as a whole by community workers was 79% (kappa statistic 0.58), and for the physician and psychologist 90 and 100%. The handicap classification was easy to use but there was some confusion with resulting poor inter-rater reliability for some questions. This could be corrected by clarification of the meaning of the questions during training. We recommend use of this classification and criteria as being simple and realistic for surveys of childhood disability conducted by community workers.     

Identification of cervical radiculopathies: optimizing the electromyographic screen

OBJECTIVE: To determine the optimal electromyography screening examination of the upper limb that ensures detection of those cervical radiculopathies, which can be electrodiagnostically confirmed, yet minimizes the number of muscles studied. DESIGN: A prospective multicenter study was conducted from May 1996 to September 1997 at five institutions. Patients who were referred to participating electrodiagnostic laboratories with suspected cervical radiculopathy were recruited. A standard set of muscles were examined by needle electromyography. Patients with electrodiagnostically confirmed cervical radiculopathies, based on electromyography findings, were selected for analysis. Muscle screens were tested against this group to determine whether the screen identified the patients with radiculopathy. RESULTS: There were 101 patients with cervical radiculopathies representing all cervical root levels. When paraspinal muscles were one of the screening muscles, five muscle screens identified 90% to 98% of radiculopathies, six muscle screens identified 94% to 99%, and seven muscle screens identified 96% to 100%. When paraspinal muscles were not part of the screen, eight distal limb muscles recognized 92% to 95% of radiculopathies. CONCLUSION: This study demonstrated that six muscle screens including paraspinal muscles yielded consistently high identification rates. Studying additional muscles led to marginal increases in identification.     

Osteogenesis imperfecta in childhood: perceived competence in relation to impairment and disability.

OBJECTIVES: To examine the perceived competence of children with different types of osteogenesis imperfecta (OI) and to investigate the possible relationships between their perceived competence and impairment parameters. DESIGN: Cross-sectional study. SETTING: National referral center (hospital) for the treatment of children with OI. PATIENTS: Forty children with OI (type I = 17; type III = 11; type IV = 12) with a mean age +/- standard deviation of 12.6 +/- 3.2 years. INTERVENTIONS: Measured joint range of motion (ROM) in the upper extremities (UEs), and lower extremities (LEs), muscle strength, functional skills, ambulation, and perceived competence. MAIN OUTCOME MEASURES: Joint ROM in UE and LE; muscle strength (using the manual muscle testing criteria of the Medical Research Council); functional skills using the Pediatric Evaluation of Disability Inventory in 3 domains (self-care, mobility, social function). Ambulation (according to Bleck and classified as nonwalking, therapy walking, household walking, neighborhood walking, community walking with or without the use of crutches), and perceived competence (using the Harter Self-Perception Profile for Children, which was cross-culturally validated for Dutch children). RESULTS: In children with type I, joint ROM and muscle strength were almost comparable to the healthy population. In children with type III, a severe decrease in joint ROM was measured, especially in the LEs, and muscle strength was severely decreased in the UEs and LEs. In children with type IV, joint ROM and muscle strength decreased, especially in the LEs. In all types, fairly to strongly positive perceived competence was measured except for fairly negative perceived competence in the athletic performance subscale in type I and a fairly negative perceived competence in the romance subscale in type III. No correlations were found between (1) joint ROM and athletic performance and physical appearance, (2) muscle strength and athletic performance or physical appearance, or (3) the functional skills, concerning self-care and mobility, with the subscales of the perceived competence. CONCLUSIONS: Although joint ROM, muscle strength, and functional and walking ability were related to the severity of the disease and differed significantly between the different types of OI, overall perceived competence in children with OI was fairly to strongly positive, without significant differences between the different types of OI.     

Identification of ethylmalonic acid in urine of two patients with the vomitting sickness of Jamaica.

Large amounts of ethylmalonic acid have been identified in urines from two patients with the vomitting sickness of Jamaica. The amounts were 178 and 882 mug per mg creatinine which are 70 and 350 times, respectively, over control values. Other short and medium chain dicarboxylic acids including glutaric and adipic acids and those with eight and ten carbon chain, saturated and cis-unsaturated, were also detected in large quantities as in the case of hypoglycin treated rats; urine. However, the large increase of urinary ethylmalonic acid in these two human cases is in a sharp contrast to the findings in hypoglycin treated rats in which urinary ethylmalonic acid increased only 3 times over control. It appears that ethylmalonic acid is produced in the cases with the vomiting sickness of Jamaica by carboxylation of n-butyryl-CoA which is not oxidized further due to the inhibition by hypoglycin A. In case of hypoglycin-treated rats, n-butyryl-CoA is mainly conjugated with glycine or deacylated to free butyric acid.     

Health maintenance and management in childhood disability

Health and health-related needs of children with disabilities are very broad in scope, and it is impossible to adequately cover all aspects in a single article. This article has tried, however, to highlight the issues common to disability, and lay the groundwork for the development of health maintenance guidelines for this population. The prevalence of childhood disability is on the rise, yet life expectancies are improving, and it is not uncommon for children even with severe disabilities to live well into adulthood. The ICIDH2 paradigm shift to focus on health and function rather than impairment and disability fits well with the national initiative to promote health for all. There is a paucity of information on the impact of childhood interventions on health in adulthood, yet it would be prudent to surmise that early interventions will be effective. Directed attention to the basic health needs and preventive measures for the management of children with disabilities is required. This can be difficult because the management of a child with disability is dynamic and challenging, and health care providers may find their time and energies consumed with just managing the more obvious and striking disability-related problems. The widespread ramifications of disability on both the individual and society, call for teamwork between family, health care providers, and the community. Although the specific needs of such a diverse group vary widely; as a group, children with disabilities have many common needs. These include the need for basic health maintenance and health promotion measures such as nutrition, immunizations and physical fitness, as well as coordination of services, psychologic and family support, technical assistance, funding resources, communication between health and education fields, and access to a "medical home," the site for primary care of the child. As a tree is bent, so it will grow. Efforts to promote growth and maximize opportunities for development, to inculcate healthy eating habits, to encourage exercise and socialization behaviors, and to strengthen the bond between the child with disability, family, and community will help minimize disability-related problems in adulthood. As children with disabilities are drawn into the mainstream of the concept of health, we should start to see the much awaited change in societal attitudes toward disability. The conditions resulting in childhood disability are many varied. Rather than developing condition specific health guidelines, it would be more advantageous to use a general health framework of anticipatory guidance, growth, development, medical management, psychologic and vocational counseling, and resource planning. Working off this framework, health maintenance and promotion measures can then be further individualized to suit the child and family's specific needs.     

Osteogenesis imperfecta in childhood: impairment and disability. A prospective study with 4-year follow-up

OBJECTIVES: To study (1). changes in anthropometrics, joint range of motion (ROM), muscle strength, functional ability, caregiver assistance, and level of ambulation in children with osteogenesis imperfecta (OI) and (2). the prediction of clinical characteristics at the level of ambulation at follow-up and the prediction of clinical characteristics on progression or regression at the level of ambulation over time. DESIGN: Prospective study with follow-up of 4 years. SETTING: A children's hospital that serves a nationwide center for treatment and research in children with OI in the Netherlands. PARTICIPANTS: At follow-up, 49 children (24 boys, 25 girls; mean age +/- standard deviation, 11.3+/-3.8y; range, 5.2-19.4y) participated. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Anthropometry, joint ROM, muscle strength, fracture frequency, intramedullary rodding, level of ambulation, functional ability, and caregiver assistance. RESULTS: In type I OI, total joint ROM decreased significantly over time, especially in the lower extremities, with a significant decrease in generalized joint hypermobility according to Bulbena (median start, 7.5; interquartile range [IQR], 4-9; median end, 6; IQR, 2-7; P<.001). In types III and IV, a severe decrease in total joint ROM was present without significant changes over time. No significant changes in total muscle strength (upper or lower extremities) in the different types of OI were measured at follow-up. In OI type I, a significant increase in self-care (P=.003) and social function (P=.008) was measured; in type III, a significant increase in self-care (P=.003), mobility (P=.004), and social function (P=.005) was measured, with a significant decrease in parental assistance in self-care (P=.02) and mobility (P=.005). In type IV, a significant increase was observed in the self-care (P=.01) and social function domains (P=.02). Type of OI (regression coefficient=-1.0; 95% confidence interval [CI], -1.64 to -0.47) and total muscle strength were the only significant predictors for level of ambulation (regression coefficient=.01; 95% CI,.17-.32). Body weight was significantly lower in the group that progressed in level of ambulation (P=.03), whereas children with a decline in level of ambulation had significantly higher body weight (P=.05). CONCLUSIONS: Ours is the first study with a long-term follow-up that provides information concerning the natural course of developmental outcome parameters of OI in childhood. Joint ROM and muscle strength did not change significantly over time, possibly because of the biomechanical skeletal properties of the different OI types. Functional ability improved significantly over time, but, especially in types III and IV, did not reach normative values, possibly because of a plateau phase in functional ability. Knowledge of the natural course of the disease is essential to interpret the results from intervention studies.     

Impairment and disability evaluation: the role of the family physician

Physicians are frequently involved in the assessment of impairment and disability as the treating physician, in consultation, or as an independent medical examiner. The key elements of this assessment include a comprehensive clinical evaluation and appropriate standardized testing to establish the diagnosis, characterize the severity of impairment, and communicate the patient's abilities, restrictions, and need for accommodation. In some cases, a functional capacity evaluation performed by a physical or occupational therapist or a neuropsychological evaluation performed by a neuropsychologist may be required to further clarify the functional capacity of the patient. The results of the impairment evaluation should be communicated in clear, simple terms to nonmedical professionals representing the benefits systems. These individuals make the final determination on the extent of disability and eligibility for benefits and compensation under that particular benefits system.     

Pathologic breast conditions in childhood and adolescence: evaluation by sonographic diagnosis.

OBJECTIVE: The growing awareness of female breast cancer has led to increased sensitivity toward pathologic breast conditions in children and adolescents. Thus, approximately 15% of patients in child and adolescent gynecology are referred for the first time because of conspicuous features of the breast such as pain, palpable masses, and other findings on visual inspection. The aim of this study was to analyze the underlying diagnoses and diseases and determine the status of breast sonography in the diagnostic process. METHODS: The study population consisted of 62 female patients between 8 weeks and 20 years of age (1997-2002) who were examined clinically, followed by standardized sonography (7.5-13 MHz, conventional B-mode panoramic sonography). Presumed diagnoses were confirmed by biopsy in some patients (n = 16) and by follow-up with clinical examination and sonography in most cases (n = 46). RESULTS: The clinical and sonographic evaluation confirmed 4 main groups of diagnoses: benign tumors (15), developmental disturbances (14), cystic changes (11), and inherent defects (7). In the remaining cases, the findings were no abnormality (9), nipple discharge without evidence of pathologic or morphologic correlates (3), abscesses (2), and epidermoid cyst (1). CONCLUSIONS: Knowledge of regular breast development and its variants is essential for the physician. Given knowledge of the sonographic appearance of physiologic breast development and specific lesions, breast sonography is most helpful in identifying and characterizing abnormalities and guiding further investigation.     

老年失能评估量表的质量评价

摘要 目的：从可行性、信度、效度和反应度四个方面对老年失能评估量表（EDAS）进行质量评价。 方法：纳入2011年8—9月在四川大学华西医院老年病科住院的老人以及参与成都市跳伞塔社区调查的老人,采用面对面访谈方式进行调查。采用SPSS 20.0 统计软件分析调查结果,考察量表的可行性、信度（重测信度、内部一致性效度和分半信度）、效度（内容效度和效标关联效度）和反应度。 结果：先后3次评估中量表的接受率均为100%,量表的完成率分别为98.8%、100%和100%。完成量表的平均时间为（14.75±2.37）min。量表总分及其所包含的各个领域和维度的重测相关系数均大于0.7;克朗巴赫系数均大于0.8;除“器官功能”维度外,其余各维度和领域以及整个量表的Spearman-Brown系数和Guttman分半系数均>0.7。量表具有良好的内容效度;量表与Barthel指数和工具性日常生活活动（IADL）量表的Pearson相关系数分别为0.812和0.855。此外,量表能够较好的区分治疗措施对于老年人功能的影响。 结论：老年失能评估量表具有较高的信度和效度,良好的可行性和反应度,为老年失能研究提供了质量可靠的评估工具。     

Psychologic evaluation in the management of chronic pain and disability

This article attempts to provide a practical template for the psychologic assessment of chronic pain and disability. Topics discussed include differential diagnosis, goals of psychosocial assessment, psychologic constructs, personality issues, pain-drawing ratings, and multidimensional assessment instruments. Other factors affecting psychologic assessment, such as litigation, perception of disability, pain behavior, and cultural factors are also discussed.     

Reporting about disability evaluation in European countries

Abstract

Purpose: To compare the official requirements of the content of disability evaluation for social insurance across Europe and to explore how the International Classification of Functioning, Disability and Health is currently applied, using the rights and obligations of people with disabilities towards society as frame of reference. Methods: Survey. We used a semi-structured questionnaire to interview members of the European Union of Medicine in Assurance and Social Security (EUMASS), who are central medical advisors in social insurance systems in their country. We performed two email follow-up rounds to complete and verify responses. Results: Fifteen respondents from 15 countries participated. In all countries, medical examiners are required to report about a claimant’s working capacity and prognosis. In 14 countries, medical reports ought to contain information about socio-medical history and feasible interventions to improve the claimant’s health status. The format of medical reporting on working capacity varies widely (free text, semi- and fully structured reports). One country makes a reference to the ICF in their reports on working capacity, others consider doing so. Conclusion: Official requirements on medical reporting about disability in social insurance across Europe follow the frame of four features: work capacity, socio-medical history, feasibility of intervention and prognosis of disability. There is an increasing trend to make formal or informal reference to the ICF in the reports about working capacity. The four features and the ICF may provide common references across countries to describe disability evaluation, facilitating national and international research.

• Implications for Rehabilitation

• Reporting about disability in social insurance in different countries is about work capacity, social medical history, feasibility of intervention and prognosis of disability.

• Formats of reporting on work capacity vary among countries, from free text to semi-structured report forms to fully structured and scaled report forms of working capacity.

• The ICF could serve as a reference for describing work capacity, provided the ICF contains all necessary categories.