Setting global research priorities for developmental disabilities, including intellectual disabilities and autism.

OBJECTIVES: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area. METHODS: An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity. FINDINGS: The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism. CONCLUSIONS: For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards.

Interventions for children with pervasive developmental disorders in low and middle income countries.

BACKGROUND: Although interventions for children with pervasive developmental disorders (PDD) have been the focus of research effort and evidence reviews in many Western countries, this evidence has not been assessed in the context of low- and middle-income (LAMI) countries especially in terms of the fit with different cultures and resources. METHOD: As a part of the WHO MH-GAP project, we carried out a systematic review of published literature relating to interventions for PDD in LAMI countries. Given the small amount of direct evidence found, we supplemented the review with findings from existing relevant evidence reviews to draw practical recommendations. RESULTS: We found only four controlled studies evaluating an intervention for children with PDD in a LAMI country. These studies all evaluated different interventions. A systematic search of controlled studies of evidence-based parenting training interventions (Incredible Years and Triple P) in non-LAMI countries identified two studies both indicating successful outcomes. CONCLUSIONS: The evidence base for interventions for PDDs in LAMI countries is sparse, and to inform practical and future research recommendations, it is important to consider potentially deliverable behavioural parent training interventions. Such interventions need to be explored in LAMI countries when delivered in primary and secondary healthcare contexts.

Interventions provided by parents for children with intellectual disabilities in low and middle income countries.

BACKGROUND: In low- and middle-income (LAMI) countries, there is a lack of well-trained therapists to provide specialist interventions for children with intellectual disabilities and their families. We sought to identify strategies deliverable by families or non-specialist workers. MATERIALS AND METHODS: After searches of appropriate scientific databases, we applied GRADE methodology to rate the quality of evidence for these interventions. RESULTS: We identified small-scale interventions trialled in LAMI countries with limited evidence of effectiveness in supporting development, adaptive behaviour and/or community participation. In high-income countries, the Stepping Stones Triple P program for adaptive behaviour and the Portage program for child development have the most extensive evidence base and may be applicable in LAMI countries. CONCLUSIONS: There is reason to hope that, when combined with community development strategies, the welfare of children with intellectual disabilities in LAMI countries can be advanced within those countries' economic means.

Efficacy of community-based rehabilitation for children with or at significant risk of intellectual disabilities in low- and middle-income countries: a review.

BACKGROUND: Community-based rehabilitation (CBR) is being implemented in more than 90 countries. Concerns have been voiced about the adequacy of the evidence base regarding the efficacy, effectiveness and efficiency of CBR. This review summarizes evidence on the efficacy of CBR for children with intellectual disabilities. MATERIALS AND METHOD: Electronic literature database searches were conducted to identify articles in the English language published since 1980 relating to the efficacy of CBR for children with intellectual disabilities. Requests for information were also sent to membership of International Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected low- and middle-income countries. RESULTS: Thirteen studies were identified for inclusion in the review. The quality of evidence for the efficacy of CBR for children with intellectual disabilities was 'very low'. CONCLUSION: Improving the evidence base will require greater investment in evaluation and addressing the marginalization of people with intellectual disabilities in CBR.

Mental health in the Islamic Republic of Iran: achievements and areas of need

The development of mental health in the Islamic Republic of Iran is described with particular reference to the integration mental health into the primary health care system. The achievements made so far are outlined and the areas of need discussed