Looking back to see forward: multidirectional learning between the US Ryan White HIV/AIDS Program and the US President's Emergency Plan for AIDS Relief.

To end the HIV epidemic as a public health threat, there is urgent need to increase the frequency, depth and intentionality of bidirectional and mutually beneficial collaboration and coordination between the USA and global HIV/AIDS response. The US Health Resources and Services Administration (HRSA) is uniquely positioned to showcase bidirectional learning between high-income and low-income and middle-income countries (LMICs) in the fight against HIV. For 30 years, HRSA has successfully administered the Ryan White HIV/AIDS Program (RWHAP), the largest federal programme designed specifically for people with HIV in the USA. Further, HRSA has developed and delivered innovative, cost-effective, impactful HIV programmes in over 30 countries as an implementing agency for the US President's Emergency Plan for AIDS Relief (PEPFAR). When PEPFAR was authorised in 2003, HRSA rapidly developed systems and infrastructures to deliver life-saving treatment, initiated workforce development programmes to mitigate health worker shortages, and laid the path for transitioning PEPFAR activities from US-based organisations to sustainable, country-led entities. As global programmes matured, lessons learnt within LMICs gradually began strengthening health services in the USA. To fully optimise synergies between RWHAP and PEPFAR, there is a critical need to build on successful initiatives, harness innovation and technology, and inculcate the spirt of multidirectional learning into global health. HRSA is promoting bidirectional learning between domestic and international HIV programming through documenting, sharing and implementing strategies, lessons learnt, best practices and effective models of care to accelerate achievement of HIV epidemic control and support country-led, sustained responses to public health threats.

Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions.

CONTEXT: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care. OBJECTIVES: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life. METHODS: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions, and medical information were collected via chart review, interviews, and surveys. RESULTS: Fifty-one of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n = 2) to time of death (n = 3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children. CONCLUSION: Although much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering.

Strengthening health policy development and management systems in low- and middle- income countries: South Africa's approach.

The development and management of health policies, strategies and guidelines (collectively, policies) in many low- and middle-income countries (LMICs) are often ad hoc and fragmented due to resource constraints a variety of other reasons within ministries of health. The ad hoc nature of these policy processes can undermine the quality of health policy analysis, decision-making and ultimately public health program implementation. To identify potential areas for policy system strengthening, we reviewed the literature to identify potential best practices for ministries and departments of health in LMICs regarding the development and management of health policies. This review led us to identify 34 potential best practices for health policy systems categorized across all five stages of the health policy process. While our review focused on best practices for ministries of health in LMICs, many of these proposed best practices may be applicable to policy processes in high income countries. After presenting these 34 potential best practices, we discuss the potential of operationalizing these potential best practices at ministries of health through the adoption of policy development and management manuals and policy information management systems using the South Africa National Department of Health's experience as an example.

A novel classification system for research reporting in rare and progressive genetic conditions.

AIM: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. METHOD: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss' kappa (κ). RESULTS: Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51-0.63), indicating moderate agreement (0.41-0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65-0.77), indicating substantial agreement (0.61-0.80). INTERPRETATION: Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required. WHAT THIS PAPER ADDS: This novel 12-category classification system can be used in research reporting in rare and progressive genetic conditions.

UN NOVEDOSO SISTEMA DE CLASIFICACIÓN PARA REPORTAR CONDICIONES GENÉTICAS RARAS Y PROGRESIVAS: OBJETIVO: Crear un sistema de clasificación para condiciones genéticas severas, raras y progresivas para uso en informes de investigación METODO: Se utilizó una técnica de consenso de Delphi modificada para crear y llegar a un acuerdo sobre un nuevo sistema de categorías de condiciones genéticas. La confiabilidad del sistema entre evaluadores se corroboró por medio de dos rondas de encuestas en linea en la que los médicos clasificaron un subconjunto de condiciones utilizando nuestro nuevo sistema. El porcentaje general de acuerdo y el acuerdo sobre la probabilidad se calcularon utilizando el kappa (κ) de Fleiss. RESULTADOS: Once médicos completaron el primer Delphi, con un acuerdo general de 76,4%, el valor de κ fue 0,57 (intervalo de confianza del 95% 0,51-0,63), lo que indica un acuerdo moderado (0,41-0,60). Sobre la base de la primera encuesta se describieron con más detalle varias categorías. La segunda encuesta confirmó un sistema de clasificación con 12 categorías, con un porcentaje de acuerdo general entre los participantes del 82,6%. El valor medio global de κ fue de 0,71 (intervalo de confianza del 95%: 0,65 a 0,77), lo que indica un acuerdo alto (0,61 a 0,80). INTERPRETACIÓN: Nuestro nuevo sistema de clasificación fue útil para categorizar una amplia gama de enfermedades infantiles raras y puede ser aplicable a otros estudios de enfermedades raras. Sugerimos validación adicional en cohortes más numerosas.

UM NOVO SISTEMA DE CLASSIFICAÇÃO PARA PESQUISAS RELATANDO CONDIÇÕES GENÉTICAS RARAS E PROGRESSIVAS: OBJETIVO: Criar um sistema de classificação para condições genéticas severas, raras e progressivas, a ser usado em relatos de pesquisas. MÉTODO: Uma técnica de consenso Delphi modificada foi usada para criar e obter concordância sobre um novo sistema de categorias de condições. A confiabilidade inter-examinadores foi testada em dois momentos por meio de um questionário virtual, pelo qual médicos classificaram um subgrupo de condições usando nosso novo sistema. A porcentagem geral de concordância e a concordância maior que o acaso foram calculadas usando kappa (k) de Fleiss. RESULTADOS: Onze médicos completaram o primeiro Delphi, com concordância geral de 76,4%, valor de k de 0,57 (intervalo de confiança a 95% 0,51-0,63), indicando concordância moderada (0,41-0,60) maior do que o acaso. Com base no primeiro questionário várias categorias foram descritas com maior detalhe. O segundo questionário confirmou um sistema de classificação com 12 categorias, com porcentagem geral de concordância entre os participantes de 82,6%. O valor de k médio geral foi 0,71 (intervalo de confiança a 95% 0,65-0,77), indicando concordância substancial (0,61-0,80). INTERPRETAÇÃO: Nosso novo sistema foi útil em categorizar uma ampla variedade de doenças da infância, e pode ser aplicável ao estudo de outras doenças raras; continuar a validação em coortes maiores é necessário.

Developing and implementing national health identifiers in resource limited countries: why, what, who, when and how?

Many resource-limited countries are scaling up health services and health-information systems (HISs). The HIV Cascade framework aims to link treatment services and programs to improve outcomes and impact. It has been adapted to HIV prevention services, other infectious and non-communicable diseases, and programs for specific populations. Where successful, it links the use of health services by individuals across different disease categories, time and space. This allows for the development of longitudinal health records for individuals and de-identified individual level information is used to monitor and evaluate the use, cost, outcome and impact of health services. Contemporary digital technology enables countries to develop and implement integrated HIS to support person centred services, a major aim of the Sustainable Development Goals. The key to link the diverse sources of information together is a national health identifier (NHID). In a country with robust civil protections, this should be given at birth, be unique to the individual, linked to vital registration services and recorded every time that an individual uses health services anywhere in the country: it is more than just a number as it is part of a wider system. Many countries would benefit from practical guidance on developing and implementing NHIDs. Organizations such as ASTM and ISO, describe the technical requirements for the NHID system, but few countries have received little practical guidance. A WHO/UNAIDS stake-holders workshop was held in Geneva, Switzerland in July 2016, to provide a 'road map' for countries and included policy-makers, information and healthcare professionals, and members of civil society. As part of any NHID system, countries need to strengthen and secure the protection of personal health information. While often the technology is available, the solution is not just technical. It requires political will and collaboration among all stakeholders to be successful.

Charting the territory: Describing the functional abilities of children with progressive neurological conditions.

AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems.

Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.

Declaration on mental health in Africa: moving to implementation.

Urgent action is needed to address mental health issues globally. In Africa, where mental health disorders account for a huge burden of disease and disability, and where in general less than 1% of the already small health budgets are spent on these disorders, the need for action is acute and urgent. Members of the World Health Organization, including African countries, have adopted a Comprehensive Mental Health Action Plan. Africa now has an historic opportunity to improve the mental health and wellbeing of its citizens, beginning with provision of basic mental health services and development of national mental health strategic plans (roadmaps). There is need to integrate mental health into primary health care and address stigma and violations of human rights. We advocate for inclusion of mental health into the post-2015 Sustainable Development Goals, and for the convening of a special UN General Assembly High Level Meeting on Mental Health within three years.

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions.

BACKGROUND: Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities. AIM: To describe these children's symptoms, as well as how the children's condition affects them physically. DESIGN: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families. SETTING/PARTICIPANTS: Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated. RESULTS: The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms. CONCLUSIONS: These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.

Factors related to changes in cognitive, educational and visual motor integration in children who undergo hematopoietic stem cell transplant.

OBJECTIVES: Investigate cognitive, educational, and perceptual motor skills up to 2 years posttransplant of pediatric hematopoietic progenitor cell transplantation (HPCT) survivors and their correlates. METHODS: Survivors were assessed at baseline, 12, and 24 months after transplant. RESULTS: Performance IQ improved over time and was negatively related to maternal depression. Full IQ and educational outcomes were positively related to child's age and mother's age. Low depression scores were associated with high Verbal IQ one and 2 years post-HPCT, and with high visual motor scores 2 years post-HPCT. Poor educational outcomes were related to increased time since diagnosis. Two years post-HPCT, Performance IQ and Processing Speed were above the norm values whereas arithmetic and motor scores were below. CONCLUSIONS: Pediatric HPCT survivors do better cognitively than educationally. Maternal age and depression, child's age, and time since diagnosis are critical factors for these outcomes.

Epidemiology of health and vulnerability among children orphaned and made vulnerable by HIV/AIDS in sub-Saharan Africa.

The HIV/AIDS epidemic in sub-Saharan Africa has already orphaned a generation of children, and it is projected that by 2010, 18 million African children under the age of 18 are likely to be orphans from this single cause (UNICEF, 2005, The state of the Worlds Children: Childhood under threat. New York: UNICEF). Results from a Kellogg funded OVC project (Skinner et al., 2004, Definition of orphaned and vulnerable children. Cape Town: HSRC) supported the construct that the loss of either or both parents would indicate a situation of likely vulnerability of children. A key problem in the literature on the impact of orphanhood on the well-being of children, families and communities, is that the focus of assertions and predictions is often on the negative impact on 'AIDS orphans', or households. There are hardly any studies that compare the experiences of orphans with non-orphans. This paper thus attempts to fill that gap. It uses epidemiological data to explore the epidemiology of health and vulnerability of children within the context of AIDS in sub-Saharan Africa. Because of data limitations, only the following aspects are examined: (i) orphan status; (ii) household structure (in particular, grandparent headedness and female-headedness); (iii) illness of parents; (iv) poverty; and (v) access to services, especially schooling, health, social services. While recognizing the limitations of the analysis, data presented in this paper indicates that orphans in sub-Saharan Africa are more vulnerable than non-orphans. The authors conclude with some suggestions for policy makers and programme implementers, highlighting the importance of focusing on interventions that will have maximum impact on the health and well-being of children.

Health-related quality of life of children and adolescents prior to hematopoietic progenitor cell transplantation: diagnosis and age effects.

BACKGROUND: The health-related quality of life (HRQOL) may vary among children before undergoing hematopoietic progenitor cell transplantation (HPCT). This study examined the HRQOL of children scheduled for HPCT, the effects of diagnosis and age on HRQOL, and the convergent validity of one generic and two disease-specific measures of HRQOL. PROCEDURE: The sample consisted of 111 children (mean age = 10.4 years) diagnosed with acute lymphoblastic leukemia (ALL; 22%), other leukemias (26%), neuroblastoma (19%), other solid tumors (18%), and hematologic disorders (15%). Convergence validity was tested with 67 children (mean age = 10.3 years) who had an equivalent distribution of diagnoses except for neuroblastoma (12%). The Child Health Questionnaire (CHQ), a generic measure, and the Pediatric Oncology Quality of Life Scale (POQOL) and the Play Performance Scale (PPS), disease-specific measures, were completed by one parent prior to HPCT. RESULTS: Compared to the norms for healthy children, the CHQ Physical summary scores for every diagnostic subgroup and the CHQ Psychosocial summary scores for ALL were poorer. Compared to the cancer norms for Total POQOL and PPS scores, scores for ALL and neuroblastoma were the poorest. These measures also revealed that adolescents' HRQOL was perceived to be worse than children's. Total POQOL scores showed strong convergent validity with CHQ Physical and Psychosocial scores and moderate convergent validity with the PPS scores. CONCLUSIONS: Based on parental reports, children treated for ALL and neuroblastoma appear to be at the greatest risk for poor HRQOL before undergoing HPCT, and adolescents seem to be more compromised than younger children, based on parental reports. The POQOL measure seems to be the best predictor of HRQOL. These results have clinical implications for the care of children undergoing HPCT.

Modified Vogel and Johnson Agar for Staphylococcus aureus.

The formula for a modified Vogel and Johnson Agar is presented. In addition to the ingredients found in Vogel and Johnson Agar, the new medium contains, per liter: 5 g of beef extract, 2 g of deoxyribonucleic acid, 2 g of phosphatidyl choline and 780 units of catalase spread on the plates before inoculation. This new medium is as effective as Baird-Parker Agar in enumeration of stressed Staphylococcus aureus , and in enumeration of staphylococci from naturally contaminated processed food samples.