Challenges and solutions to implementing drug-resistant tuberculosis programmes for children in Central Asia

Guidelines for children with drug-resistant tuberculosis (DR-TB) tend to focus on individual patient care; there is little guidance for national tuberculosis programmes (NTPs) on how to plan, implement and integrate DR-TB services for children. In 2013, through the paediatric tuberculosis (TB) programme started by the Tajikistan Ministry of Health and Médecins Sans Frontières in 2011, 21 children became the first to be treated for multidrug-resistant tuberculosis (MDR-TB) in Tajikistan. We describe the challenges encountered in establishing the programme and the solutions to these challenges, and propose a framework to guide the implementation of paediatric DR-TB care. This framework could prove useful for other NTPs in resource-limited settings.     

Establishing local priorities for a health research agenda

Aim/Background

To describe the two‐stage prioritization process being used by the UK National Institute for Health Research''s Collaboration for Leadership in Applied Health Research and Care for the South‐West Peninsula (or PenCLAHRC) – a joint health service and university partnership and reflect on implications for the wider context of priority setting in health‐care research.

Method

PenCLAHRC''s process establishes the priorities of Stakeholders including service users across a regional health system for locally relevant health services research and implementation. Health research questions are collected from clinicians, academics and service users in Devon and Cornwall (UK) using a web‐based question formulation tool. There is a two‐stage prioritization process which uses explicit criteria and a wide Stakeholder group, including service users to identify important research questions relevant to the south‐west peninsula locality.

Results

To date, a wide variety of health research topics have been prioritized by the PenCLAHRC Stakeholders. The research agenda reflects the interests of academics, clinicians and service users in the local area. Potential challenges to implementation of the process include time constraints, variable quality of questions (including the language of research) and initiating and maintaining engagement in the process. Shared prioritization of local health research needs can be achieved between Stakeholders from a wide range of perspectives.

Conclusions

The processes developed have been successful and, with minor changes, will continue to be used during subsequent rounds of prioritization. Engagement of Stakeholders in establishing a research agenda encourages the most relevant health questions to be asked and may improve implementation of research findings and take up by service users.     

Mental health research priorities in Australia: a consumer and carer agenda

Background

The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia.

Method

The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n?=?25), followed by a national online survey (Study 2; n?=?70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics.

Results

At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement.

Conclusions

Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.

     

Children''s return to school after treatment for solid tumours

Great advances have been made in recent years in the treatment of children's cancers. Consequently, increasing numbers are now returning to school. The pilot study described in this paper looks at the problems experienced by some of these children, their teachers and parents, and some of the solutions which have been found, with a view to eventually taking some action to help the situation. The results are based on detailed studies of 16 children who had all been off treatment for two or more years and had therefore returned to school on a normal full-time basis. Parents and teachers were interviewed. The preparation for the return to school, reintegration problems including general physical, academic, psychological and behavioural ones, schoolmates' reactions, siblings' reactions, and the teachers, and parents, suggestions for how these might be alleviated are considered. Five important factors emerged especially clearly: Children whose treatment absence was right at the start of their schooling had particularly severe problems in integrating into school. Children at secondary schools had special anxieties about their school-work, especially Mathematics, which leads to consideration of the whole problem of teaching during absence from school. Some children are having severe problems in obtaining efficient prostheses. Whilst classmates were usually welcoming or unconcerned, much teasing was experienced from children in other classes, particularly in secondary schools. Whilst attention is focused on the sick child, siblings are developing severe problems of their own which need special attention. Most teachers and parents would have welcomed advice on or help with these problems and it is hoped that, when a larger scale study has clarified the finer points, some systems for helping will be devised.     

Setting priorities for research: a practical application of 'payback' and expected value of information

BACKGROUND: Setting priorities for research using economic in addition to scientific criteria can ensure that resources are spent efficiently and equitably. OBJECTIVE: This study applies two priority setting methods 'payback' and expected value of information (EVI) to two research areas (osteoporosis and pressure ulcers) and where appropriate to four clinical trials: the Record Trial, the Vitamin D and Calcium Trial and the Hip Protector Trial (osteoporosis), and the Pressure Trial (wound care). METHODS: Two decision-analytic models were developed. For 'payback', the PATHS model was used to estimate the expected net benefits of conducting the four clinical trials. An EVI framework was applied to estimate the cost-effectiveness of conducting further research in the two disease areas investigated. RESULTS: The application of 'payback' suggests that the Record Trial and the Vitamin D and Calcium Trial would be cost-effective. The Hip Protector and the Pressure Ulcer Trial are cost-effective under certain assumptions concerning the likelihood of obtaining positive, negative or inconclusive results. The EVI method suggests that research would be potentially cost-effective in these areas in the populations considered. CONCLUSION: EVI provides strategic information for setting priorities for research between disease areas and study populations. 'Payback' provides information on the cost-effectiveness of specific research designs. However, further work in this area, particularly concerning the issue of implementation of research, is required.     

Setting research priorities for adolescent sexual and reproductive health in low- and middle-income countries

Objective

To conduct an expert-led process for identifying research priorities in adolescent sexual and reproductive health in low- and middle-income countries.

Methods

The authors modified the priority-setting method of the Child Health and Nutrition Research Initiative (CHNRI) to obtain input from nearly 300 researchers, health programme managers and donors with wide-ranging backgrounds and experiences and from all geographic regions. In a three-Phase process, they asked these experts to: (i) rank outcome areas in order of importance; (ii) formulate research questions within each area, and (iii) rank the formulated questions.

Findings

Seven areas of adolescent sexual and reproductive health were identified as important: (i) maternal health; (ii) contraception; (iii) gender-based violence; (iv) treatment and care of patients with human immunodeficiency virus (HIV) infection; (v) abortion; (vi) integration of family planning and HIV-related services and (vii) sexually transmitted infections. Experts generated from 30 to 40 research questions in each area, and to prioritize these questions, they applied five criteria focused on: clarity, answerability, impact, implementation and relevance for equity. Rankings were based on overall mean scores derived by averaging the scores for individual criteria. Experts agreed strongly on the relative importance of the questions in each area.

Conclusion

Research questions on the prevalence of conditions affecting adolescents are giving way to research questions on the scale-up of existing interventions and the development of new ones. CHNRI methods can be used by donors and health programme managers to prioritize research on adolescent sexual and reproductive health.     

Minimum primary health care interventions for child survival: Setting the research agenda

With the purpose of exposing some of the underlying issues, the first part of the article discusses the background and assumptions inherent to the idea of minimum primary health care interventions for child survival. The second part puts forward some areas for study, based upon their potential importance to child health and survival. International and national approaches to ‘minimum interventions’ are seen as being rooted in their political contexts, including the wider debate over the relationships between economic growth, development and the meeting of basic needs. To have relevance for health planning and management, it is argued that research agendas concerned with the impact of primary health care (PHC) interventions upon child survival must be: country-specific; start with ‘what is’; and take entire national frameworks into account, including the respective roles and effects of the private and public sectors. Potentially useful research activities are discussed in the areas of coverage and resource allocation, and with regard to the development of minimum norms and standards. Proposals are made for setting a research agenda for PHC programmes in Mexico.     

The application of an occupational therapy nutrition education programme for children who are obese

The aim of this study was to evaluate an occupational therapy nutrition education programme for children who are obese with the use of two interactive games. A quasi-experimental study was carried out at a municipal school in Fortaleza, Brazil. A convenient sample of 200 children ages 8-10 years old participated in the study. Data collection comprised a semi-structured interview, direct and structured observation, and focus group, comparing two interactive games based on the food pyramid (video game and board game) used individually and then combined. Both play activities were efficient in the mediation of nutritional concepts, with a preference for the board game. In the learning strategies, intrinsic motivation and metacognition were analysed. The attention strategy was most applied at the video game. We concluded that both games promoted the learning of nutritional concepts. We confirmed the effectiveness of the simultaneous application of interactive games in an interdisciplinary health environment. It is recommended that a larger sample should be used in evaluating the effectiveness of play and video games in teaching healthy nutrition to children in a school setting.     

Consolidating a research agenda for vaccine mandates

A workshop on mandatory vaccination was pitched to the World Public Health Congress in 2019 and the resultant special issue was pitched to Vaccine in 2020. During this project, the COVID-19 pandemic pushed vaccine policy to the forefront of global public health policy, and the imposition of vaccine mandates prompted a new wave of scholarship in the field. This introductory article employs the heuristic of Lasswell’s (1956) policy cycle to synthesise the findings of the articles in the special issue. It considers the temporal lifetime of mandates and highlights findings regarding: the emergence of mandates as a policy option, public support and policy instrument design, what matters in the implementation of mandates, and what we can learn from evaluating them. The second half of the paper categorizes the included papers in terms of what aspects of mandates they study and the methods they employ to do so, in order to formulate a guide for future researchers of vaccine mandates. Scholars study either speculative or existing mandates – research can address several stages of the policy cycle or just one of them, ranging from attitudinal research to implementation studies and impact studies. Historical and contextual studies that take deep dives into a particular mandate are a much needed resource for studying emerging mandates, too, and scoping and framework- building work will undoubtedly be valuable in understanding and appreciating the wealth of knowledge production in this growing field. This special issue can serve as a roadmap for a consolidation of this interdisciplinary research agenda, and provide a helpful resource for decisionmakers at this historical juncture.     

Setting priorities for comparative effectiveness research: from assessing public health benefits to being open with the public

Medicine's current evidence base is insufficient for many of the decisions made daily by clinicians, patients, purchasers, and policy makers. The Patient-Centered Outcomes Research Institute represents an effort by the US government to address this shortcoming by funding comparative effectiveness research. Prioritizing that research will be a critical first step. To better understand components of an optimal process, we reviewed the literature and conducted interviews regarding the prioritization efforts of leading public and private health organizations in the United States and abroad. From this review, we propose a framework for prioritization, pose and answer key questions, and make recommendations regarding application of that framework. We also recommend that during the priority-setting process, there should be transparent conversations among those who make decisions about the priorities and the public.     

Toward a global agenda for research in environmental epidemiology

The global environment is in critical decline. Whether one's concern about environmental epidemiology stems from the perspectives of environmental health, climate change, ecological collapse, or growing inequity, clear problems exist. Natural capital resources are being depleted; disregard for the integrity of ecosystems is entrenched in current business practices. Indeed, despite increasing rhetoric to the contrary, the disregard displayed by those who hold power globally toward long-term sustainability and, thus, the health and well-being of future generations, could be described as wanton. Six years ago, the Millennium Development Goals were announced by the United Nations as a rallying point for action to achieve a sustainable future, particularly by reducing the gap between the "have mores" and "have nots." The attainment of these Goals is now endangered, as is, apparently, the spirit of optimism and idealism that inspired them at the Millennium Summit. We call for a reinvigoration of both concern about-and action on-sustainability. In particular, we appeal to those engaged in the field of environmental epidemiology (and other specialties with whom they engage) to consider how they might help by incorporating sustainability issues (including global ecological integrity and global environmental justice) into their own research programs. This incorporation would make a vital contribution to protect both present and future generations and to reduce resource and health gaps between North and South. Simply put, we propose that sustainability becomes integral to advancing the science of environmental epidemiology and related environmental disciplines.     

Setting priorities and identifying barriers for general practice research in Europe. Results from an EGPRW meeting

BACKGROUND: In spring 2002, WONCA Europe, the European Society of General Practice/Family Medicine and its Network organizations reached consensus on a 'new' European definition of general practice. Subsequently, the European General Practice Research Workshop (EGPRW) started working on a European General Practice Research Agenda. This topic was addressed during the 2002 EGPRW autumn meeting. OBJECTIVE: Our aim was to explore the views of European general practice researchers on needs and priorities as well as barriers for general practice research in Europe. METHODS: In seven discussion groups, 43 general practice researchers from 18 European countries had to answer the following questions. (i) What major topics should be included in a research agenda for general practice in your country? (ii) What are the barriers to adequate implementation of general practice research in your country? Group answers were listed and subsequently categorized by two authors. RESULTS: Research on 'clinical issues' (common diseases, chronic diseases, etc.), including diagnostic strategies, was considered to be the core content of general practice research, with primary care-based morbidity registration essential for surveillance of disease, clinical research and teaching in general practice. There was also consensus on the need for research on education and teaching. 'Insufficient funding opportunities' was perceived to be the major barrier to the development of general practice research. CONCLUSIONS: These findings could be used as a basis for national checklists of 'content of' and 'conditions for' general practice research. European general practice research training programmes should be developed further.     

Transition to adult care: experiences and expectations of adolescents with a chronic illness

Background Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult‐centred care during the transition process in order guide effective programme design and implementation. Methods Qualitative content and thematic analysis of semi‐structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1–3 time points over an 18‐month study period. Results Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one‐third of participants made the transition to adult‐oriented health care. All participants who had transitioned to adult‐oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re‐establishing relationships and bringing a new team ‘up to speed’. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult‐oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult‐oriented venues prior to transition might aid in the transition process. Conclusions Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult‐oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.     

The ADA's research priorities contribute to a bright future for dietetics professionals

The ADA research philosophy is that research is the foundation of the profession, providing the basis for practice, education, and policy (6) and (7). Evidence-based practice and the development of nutrition care guidelines presume that the body of research is adequate and continually addresses key questions related to provision of nutrition care (13). Key characteristics of a viable profession and strategies for success include the continual infusion of ideas and effective use of research in evidence-based practice (5) and (14). Involvement of all the members of the profession is essential to the continued dynamic nature of dietetics. It is necessary to ensure that ADA members, ADA organizational units, and external funding organizations address the most important research. The Research Committee is exploring how to measure progress toward the research priorities and determine how to update the priorities on an ongoing basis to reflect the current research needs of the dietetics profession.ADA Priorities for Research

• Prevention and Treatment of Obesity and Associated Chronic Diseases

• Effective Nutrition and Lifestyle Change Interventions

• Translation of Research into Nutrition Interventions and Programs

• Effective Nutrition Indicators and Outcome Measures

• Dietetics Education and Retention

• Delivery of and Payment for Dietetic Services

• Access to Safe and Secure Food Supply

• Customer Satisfaction

• Nutrients and Gene Expression

(For specific research objectives under each priority area, see full text at www.eatright.org/Public/index_9916.cfm)(2)     

Identifying the sources of tuberculosis in young children: a multistate investigation

To better understand the molecular epidemiology of tuberculosis (TB) transmission for culture-confirmed patients <5 years of age, data were analyzed from a population-based study conducted in seven U.S. sites from 1996 to 2000. Mycobacterium tuberculosis isolates were genotyped with IS6110-based restriction fragment length polymorphism analysis and spoligotyping. Case-patient data were obtained from the Centers for Disease Control and Prevention s national tuberculosis registry and health department records. Routine public health investigations conducted by local health departments identified suspected source patients for 57 (51%) of 111 culture-confirmed patients <5 years of age. For 8 (15%) of 52 culture-confirmed patients <5 years of age and their suspected source patients with complete genotyping results, genotypes suggested infection with different TB strains. Potential differences between sources for patients <5 years of age and source patients that transmitted TB to adolescent and adult patients were identified.