Access to primary health care for Australian adolescents: How congruent are the perspectives of health service providers and young people,and does it matter?

OBJECTIVE: To explore the extent of congruence between the views of service providers and young people (on adolescents' health concerns, barriers to accessing health services and ideal service model) in order to improve and increase the appropriateness, quality and usage of primary health care services. METHODS: A qualitative data collection technique was used. During 2001/02, focus groups were conducted in urban and rural locations with adolescents (in and out of mainstream education), general practitioners, community health staff and youth health workers. RESULTS: Service providers and young people identified a similar range of health concerns for young people, with young people adding additional issues of great importance to them that service providers felt were not in their 'domain of treatment'. There was reasonable congruence in regard to 'ideal service model' with some differences relating to methods of information delivery. However, for 'barriers to accessing services' there were major discrepancies. CONCLUSIONS: While there is some common understanding between young people and service providers on certain aspects of health services, there are clearly areas where perceptions differ. This discrepancy matters because it may adversely affect the quality of provider-adolescent interaction and the willingness of adolescents to access services. IMPLICATIONS: To deliver optimal health services to young people, the differences in understanding regarding services need to be addressed. Strategies could include promotion to, and encouragement of, young people to seek help, continuing professional education of providers and changes in remuneration policies.     

Accelerating measles and rubella elimination through research and innovation – Findings from the Measles & Rubella Initiative research prioritization process, 2016

The Measles & Rubella Initiative (M&RI) identified five key strategies to achieve measles and rubella elimination, including research and innovation to support cost-effective operations and improve vaccination and diagnostic tools. In 2016, the M&RI Research and Innovation Working Group (R&IWG) completed a research prioritization process to identify key research questions and update the global research agenda. The R&IWG reviewed meeting reports and strategic planning documents and solicited programmatic inputs from vaccination experts at the program operational level through a web survey, to identify previous research priorities and new research questions. The R&IWG then convened a meeting of experts to prioritize the identified research questions in four strategic areas: (1) epidemiology and economics, (2) surveillance and laboratory, (3) immunization strategies, and (4) demand creation and communications. The experts identified 19 priority research questions in the four strategic areas to address key areas of work necessary to further progress toward elimination. Future commitments from partners will be needed to develop a platform for improved coordination with adequate and predictable resources for research implementation and innovation to address these identified priorities.     

Project Kealahou: Improving Hawai‘i's System of Care for At-Risk Girls and Young Women through Gender-Responsive,Trauma-Informed Care

Project Kealahou (PK) is a six-year, federally-funded program aimed at improving services and outcomes for Hawai‘i''s female youth who are at risk for running away, truancy, abuse, suicide, arrest and incarceration. PK builds upon two decades of sustained cross-agency efforts among the state''s mental health, juvenile justice, education, and child welfare systems to promote system-of-care (SOC) principles of community-based, individualized, culturally and linguistically competent, family driven, youth-guided, and evidence-based services. In addition, PK emphasizes trauma-informed and gender-responsive care in serving its target population of females ages 11–18 years who have experienced psychological trauma.Results from the first four years of the implementation of PK in the Department of Health''s (DOH) Child and Adolescent Mental Health Division (CAMHD) highlight the serious familial, socioeconomic, functional, and interpersonal challenges faced by the young women who receive services in Hawai‘i''s SOC. Despite the challenges faced by PK youth and their families, preliminary results of the evaluation of PK show significant improvements across multiple clinical and functional domains of service recipients. A financial analysis indicates that these outcomes were obtained with a minimal overall increase in costs when compared to standard care alone. Overall, these results suggest that PK may offer a cost effective way to improve access, care, and outcomes for at-risk youth and their families in Hawai‘i.     

Serious pneumococcal disease outbreak in men exposed to metal fume – detection,response and future prevention through pneumococcal vaccination

Welders and those exposed to metal fume are known to be at increased risk of pneumococcal pneumonia and invasive pneumococcal disease. Current UK guidance recommends that vaccination against pneumococcus be considered in those at risk of frequent or continuous occupational exposure to metal fume, taking into account the exposure control measures in place. We report an outbreak of serious pneumococcal disease that occurred between April and June 2015 among a multinational workforce exposed to metal fumes while working on the refurbishment of an oil rig in a Belfast shipyard. Four confirmed and five probable cases were identified, which occurred despite the use of environmental control measures and the availability of respiratory protective equipment. To provide direct protection to those at risk of pneumococcal disease and to eradicate carriage of pneumococcus and interrupt transmission, pneumococcal polysaccharide vaccine (PPV23) and antibiotic prophylaxis were offered to 680 individuals identified as potentially exposed to metal fume. Low levels of prior pneumococcal vaccination were reported among this target group (<1%). Genomic sequencing indicated a common strain of serotype 4 pneumococcus in two of the confirmed cases and a distinct serotype 4 in one case. The fourth confirmed case was identified as likely serotype 3 using a serotype-specific immunoassay on a urine specimen. Both serotypes 3 and 4 are vaccine-preventable strains covered by the conjugate and polysaccharide pneumococcal vaccines currently available. We propose that consideration should be given to strengthening implementation around pneumococcal vaccination for those exposed to metal fume through their work, even when other control measures are in place, to reduce the risk of future cases and outbreaks of serious pneumococcal disease.     

Recreational and occupational field exposure to freshwater cyanobacteria – a review of anecdotal and case reports, epidemiological studies and the challenges for epidemiologic assessment

Background

Persistent organic pollutants (POPs) such as polychlorinated dibenzo-p-dioxins/furans, polychlorinated biphenyls (PCBs) and organochlorine pesticides can cause a series of adverse effects on e.g. reproduction in animals and humans, many of which involve the aryl hydrocarbon receptor (AhR). The aim of the present study was to compare the integrated serum level of AhR mediated activity among European and Inuit populations, and evaluate whether the activity was associated to the selected POP markers, 2,2',4,4',5,5'-hexachlorobiphenyl (CB-153) and 1,1-dichloro-2,2-bis(p-chlorophenyl)-ethylene (p,p'-DDE).

Methods

The study included 338 males from Greenland (Inuit's), Sweden, Warsaw (Poland) and Kharkiv (Ukraine). The AhR transactivity of serum extracts alone (AhRag) and competitive AhR activity (AhRcomp) upon co-exposure with 2,3,7,8-tetrachlorodibenzo-p-dioxin (TCDD) were determined in the lipophilic serum fraction containing the POPs using the AhR mediated luciferase reporter Hepa1.12cR cell assay.

Results

The European groups showed higher median level of AhR-TEQ (TCDD toxic equivalents) compared to the Inuit's, whereas higher incidence of Inuits sample further induced AhRcomp activity. Neither AhRag nor AhR-TEQ were correlated to CB-153 or p,p'-DDE for any of the study groups. Multiple regressions showed a significant heterogeneity of association between the CB-153 and the AhRcomp across the study groups, and accordingly a negative association between AhRcomp and CB-153 was found for the Kharkiv group.

Conclusion

No consistent correlation between AhR activities and two POP markers was found. Although the difference of AhRag between European and Inuit men could not be explained by CB-153 or p,p'-DDE levels alone, we believe that the variation of AhR serum activity reflects different pattern of POP exposure, genetics and/or life style factors.     

Improving Transparency to Build Trust in Real-World Secondary Data Studies for Hypothesis Testing—Why,What, and How: Recommendations and a Road Map from the Real-World Evidence Transparency Initiative

Real-world data (RWD) and the derivations of these data into real-world evidence (RWE) are rapidly expanding from informing healthcare decisions at the patient and health system level to influencing major health policy decisions, including regulatory approvals and coverage. Recent examples include the approval of palbociclib in combination with endocrine therapy for male breast cancer and the inclusion of RWE in the label of paliperidone palmitate for schizophrenia. This interest has created an urgency to develop processes that promote trust in the evidence-generation process. Key stakeholders and decision-makers include patients and their healthcare providers; learning health systems; health technology assessment bodies and payers; pharmacoepidemiologists and other clinical reseachers, and policy makers interested in bioethical and regulatory issues. A key to optimal uptake of RWE is transparency of the research process to enable decision-makers to evaluate the quality of the methods used and the applicability of the evidence that results from the RWE studies.Registration of RWE studies—particularly for hypothesis evaluating treatment effectiveness (HETE) studies—has been proposed to improve transparency, trust, and research replicability. Although registration would not guarantee better RWE studies would be conducted, it would encourage the prospective disclosure of study plans, timing, and rationale for modifications. A joint task force of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the International Society for Pharmacoepidemiology (ISPE) recommended that investigators preregister their RWE studies and post their study protocols in a publicly available forum before starting studies to reduce publication bias and improve the transparency of research methods.Recognizing that published recommendations alone are insufficient, especially without accessible registration options and with no incentives, a group of experts gathered on February 25 and 26, 2019, in National Harbor, Maryland, to explore the structural and practical challenges to the successful implementation of the recommendations of the ISPOR/ISPE task force for preregistration. This positioning article describes a plan for making registration of HETE RWE studies routine. The plan includes specifying the rationale for registering HETE RWE studies, the studies that should be registered, where and when these studies should be registered, how and when analytic deviations from protocols should be reported, how and when to publish results, and incentives to encourage registration. Table 1 summarizes the rationale, goals, and potential solutions that increase transparency, in addition to unique concerns about secondary data studies.Definitions of terms used throughout this report are provided in Table 2.     

Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS<Superscript>®</Superscript>) measures in juvenile idiopathic arthritis using standard setting with patients,parents, and providers

Background

Patient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.

Methods

We identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent “just enough improvement to make a difference.”

Results

For fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.

Conclusions

We estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.

     

The fight against poliomyelitis through the history: past,present and hopes for the future. Albert Sabin's missing Nobel and his “gift to all the world's children”

Polio, or poliomyelitis, is a disabling and life-threatening disease caused by three poliovirus (PV) serotypes. The virus spreads from person to person and can infect a person’s spinal cord, causing paralysis. In 1988, when the WHO registered 350,000 cases of poliomyelitis in the world and 70,000 which occurred in Africa alone, global poliomyelitis eradication was proposed by the World Health Organization to its member States. On 25 August 2020, while the world was waging war against the Coronavirus pandemic, a historic milestone was reached: Africa was officially declared polio-free.It is an important result obtained thanks to an intensive large-scale vaccination campaign.The road was far from smooth, nevertheless, according to the WHO, a great effort needs to be made in order to facilitate access to vaccination and to promote its implementation in those countries where coverage is low and vaccine hesitancy is high because the risk of the spread of poliomyelitis is still relevant. Eradication of the virus in Africa provides us with an excellent opportunity to commemorate the many scientists who contributed to achieving this epoch-making goal: first of all, Jonas Salk, who developed a killed-virus vaccine in 1952, and, especially, Albert Sabin, who in 1961 launched programs of mass immunisation with his oral vaccine against poliomyelitis.     

Socio-economic,clinical and biological risk factors for mother - to – child transmission of HIV-1 in Muhima health centre (Rwanda): a prospective cohort study

Background

Three decades since the first HIV-1 infected patients in Rwanda were identified in 1983; the Acquired Immunodeficiency Syndrome epidemic has had a devastating history and is still a major public health challenge in the country. This study was aimed at assessing socioeconomic, clinical and biological risk factors for mother – to – child transmission of HIV- in Muhima health centre (Kigali/Rwanda).

Methods

The prospective cohort study was conducted at Muhima Health centre (Kigali/Rwanda).During the study period (May 2007 – April 2010), of 8,669 pregnant women who attended antenatal visits and screened for HIV-1, 736 tested HIV-1 positive and among them 700 were eligible study participants. Hemoglobin, CD4 count and viral load tests were performed for participant mothers and HIV-1 testing using DNA PCR technique for infants.Follow up data for eligible mother-infant pairs were obtained from women themselves and log books in Muhima health centre and maternity, using a structured questionnaire.Predictors of mother-to-child transmission of HIV-1 were assessed by multivariable logistic regression analysis.

Results

Among the 679 exposed and followed-up infants, HIV-1 status was significantly associated with disclosure of HIV status to partner both at 6 weeks of age (non-disclosure of HIV status, adjusted odds ratio [AOR] 4.68, CI 1.39 to 15.77, p < 0.05; compared to disclosure) and at 6 months of age (non-disclosure of HIV status, AOR, 3.41, CI 1.09 to 10.65, p < 0.05, compared to disclosure).A significant association between mother’s viral load (HIV-1 RNA) and infant HIV-1 status was found both at 6 weeks of age (> = 1000 copies/ml, AOR 7.30, CI 2.65 to 20.08, p < 0.01, compared to <1000 copies/ml) and at 6 months of age (> = 1000 copies/ml, AOR 4.60, CI 1.84 to 11.49, p < 0.01, compared to <1000 copies/ml).

Conclusion

In this study, the most relevant factors independently associated with increased risk of mother – to – child transmission of HIV-1 included non-disclosure of HIV status to partner and high HIV-1 RNA. Members of this cohort also showed socioeconomic inequalities, with unmarried status carrying higher risk of undisclosed HIV status. The monitoring of maternal HIV-1 RNA level might be considered as a routinely used test to assess the risk of transmission with the goal of achieving viral suppression as critical for elimination of pediatric HIV, particularly in breastfeeding populations.