Language in tuberculosis services: can we change to patient-centred terminology and stop the paradigm of blaming the patients?

The words 'defaulter', 'suspect' and 'control' have been part of the language of tuberculosis (TB) services for many decades, and they continue to be used in international guidelines and in published literature. From a patient perspective, it is our opinion that these terms are at best inappropriate, coercive and disempowering, and at worst they could be perceived as judgmental and criminalising, tending to place the blame of the disease or responsibility for adverse treatment outcomes on one side-that of the patients. In this article, which brings together a wide range of authors and institutions from Africa, Asia, Latin America, Europe and the Pacific, we discuss the use of the words 'defaulter', 'suspect' and 'control' and argue why it is detrimental to continue using them in the context of TB. We propose that 'defaulter' be replaced with 'person lost to follow-up'; that 'TB suspect' be replaced by 'person with presumptive TB' or 'person to be evaluated for TB'; and that the term 'control' be replaced with 'prevention and care' or simply deleted. These terms are non-judgmental and patient-centred. We appeal to the global Stop TB Partnership to lead discussions on this issue and to make concrete steps towards changing the current paradigm

Tuberculosis patients' knowledge and beliefs about tuberculosis: a mixed methods study from the Pacific Island nation of Vanuatu

Background: The setting for this study was the Pacific island nation of Vanuatu, an archipelago of 82 islands, located in the South Pacific Ocean. Our objective was to assess the knowledge, attitudes and practices of tuberculosis (TB) patients towards TB. Methods. This was a descriptive study using qualitative and quantitative methods. Quantitative analysis was based on the responses provided to closed questions, and we present frequencies to describe the TB patients' knowledge, attitudes and practice relating to TB. Qualitative analysis was based on open questions permitting fuller explanations. We used thematic analysis and developed a posteriori inductive categories to draw conclusions. Results: Thirty five TB patients were interviewed; 22 (63%) were male. They attributed TB to cigarettes, kava, alcohol, contaminated food, sharing eating utensils and "kastom" (the local term for the traditional way of life, but also for sorcery). Most (94%) did not attribute TB to a bacterial cause. However, almost all TB patients (89%) thought that TB was best treated at a hospital with antibiotics. Three quarters (74%) experienced stigma after their TB diagnosis.Seeking health care from a traditional healer was common; 54% of TB patients stated that they would first consult a traditional healer for any illness. When seeking a diagnosis for signs and symptoms of TB, 34% first consulted a traditional healer. Patients cited cost, distance and beliefs about TB causation as reasons for first consulting a traditional healer or going to the hospital. Of the TB patients who consulted a traditional healer first, there was an average of two weeks delay before they consulted the health service. In some cases, however, the delay was up to six years. Conclusion: The majority of the TB patients interviewed did not attribute TB to a bacterial cause. Consulting a traditional healer for health care, including while seeking a diagnosis for TB symptoms, was common and may have delayed diagnosis. People require better information about TB to correct commonly held misperceptions about the disease. Traditional healers could also be engaged with the national TB programme, in order to refer people with signs and symptoms of TB to the nearest health service

A systematic review of scabies transmission models and data to evaluate the cost-effectiveness of scabies interventions

© 2019 van der Linden et al. Background: Scabies is a common dermatological condition, affecting more than 130 million people at any time. To evaluate and/or predict the effectiveness and cost-effectiveness of scabies interventions, disease transmission modelling can be used. Objective: To review published scabies models and data to inform the design of a comprehensive scabies transmission modelling framework to evaluate the cost-effectiveness of scabies interventions. Methods: Systematic literature search in PubMed, Medline, Embase, CINAHL, and the Cochrane Library identified scabies studies published since the year 2000. Selected papers included modelling studies and studies on the life cycle of scabies mites, patient quality of life and resource use. Reference lists of reviews were used to identify any papers missed through the search strategy. Strengths and limitations of identified scabies models were evaluated and used to design a modelling framework. Potential model inputs were identified and discussed. Findings: Four scabies models were published: a Markov decision tree, two compartmental models, and an agent-based, network-dependent Monte Carlo model. None of the models specifically addressed crusted scabies, which is associated with high morbidity, mortality, and increased transmission. There is a lack of reliable, comprehensive information about scabies biology and the impact this disease has on patients and society. Discussion: Clinicians and health economists working in the field of scabies are encouraged to use the current review to inform disease transmission modelling and economic evaluations on interventions against scabies

Managing healthcare budgets in times of austerity: the role of program budgeting and marginal analysis

Given limited resources, priority setting or choice making will remain a reality at all levels of publicly funded healthcare across countries for many years to come. The pressures may well be even more acute as the impact of the economic crisis of 2008 continues to play out but, even as economies begin to turn around, resources within healthcare will be limited, thus some form of rationing will be required. Over the last few decades, research on healthcare priority setting has focused on methods of implementation as well as on the development of approaches related to fairness and legitimacy and on more technical aspects of decision making including the use of multi-criteria decision analysis. Recently, research has led to better understanding of evaluating priority setting activity including defining ‘success’ and articulating key elements for high performance. This body of research, however, often goes untapped by those charged with making challenging decisions and as such, in line with prevailing public sector incentives, decisions are often reliant on historical allocation patterns and/or political negotiation. These archaic and ineffective approaches not only lead to poor decisions in terms of value for money but further do not reflect basic ethical conditions that can lead to fairness in the decision-making process. The purpose of this paper is to outline a comprehensive approach to priority setting and resource allocation that has been used in different contexts across countries. This will provide decision makers with a single point of access for a basic understanding of relevant tools when faced with having to make difficult decisions about what healthcare services to fund and what not to fund. The paper also addresses several key issues related to priority setting including how health technology assessments can be used, how performance can be improved at a practical level, and what ongoing resource management practice should look like. In terms of future research, one of the most important areas of priority setting that needs further attention is how best to engage public members

Patterns and Predictors of Healthcare Use among Adolescent and Young Adult Cancer Survivors versus a Community Comparison Group.

Healthcare use (HCU) during survivorship can mitigate adolescent and young adult (AYA) cancer survivors' (aged 15-39 years) risk of medical and psychosocial late effects, but this is understudied. We surveyed 93 Australian AYA post-treatment cancer survivors (Mage = 22.0 years, SD = 3.5; 55.9% female) and a comparison sample of 183 non-matched AYAs (Mage = 19.7, SD = 3.2; 70.5% female) on their HCU, medication use, depression/anxiety, and general functioning. Relative to our comparison AYAs, a higher proportion of our survivor group reported medical HCU (community-delivered: 65.6% versus 47.0%, p = 0.003; hospital-delivered: 31.2% versus 20.3%, p = 0.044) and mental HCU (53.8% vs. 23.5%; p < 0.0001) in the past six months. A higher proportion of our survivors reported taking medications within the past six months than our comparison AYAs (61.3% vs. 42.1%, p = 0.003) and taking more types (p < 0.001). Vitamin/supplement use was most common followed by psychotropic medications. Our survivor group reported lower depression (p = 0.001) and anxiety symptoms (p = 0.003), but similar work/study participation (p = 0.767) to our comparison AYAs. Across groups, psychological distress was associated with higher mental HCU (p = 0.001). Among survivors, those who were female, diagnosed with brain/solid tumors and who had finished treatment more recently reported greater HCU. Future research should establish whether this level of HCU meets AYAs' survivorship needs

Health care cost of crusted scabies in Aboriginal communities in the Northern Territory, Australia.

BACKGROUND: Crusted scabies is a debilitating dermatological condition. Although still relatively rare in the urban areas of Australia, rates of crusted scabies in remote Aboriginal communities in the Northern Territory (NT) are reported to be among the highest in the world. OBJECTIVE: To estimate the health system costs associated with diagnosing, treating and managing crusted scabies. METHODS: A disease pathway model was developed to identify the major phases of managing crusted scabies. In recognition of the higher resource use required to treat more severe cases, the pathway differentiates between crusted scabies severity grades. The disease pathway model was populated with data from a clinical audit of 42 crusted scabies patients diagnosed in the Top-End of Australia's Northern Territory between July 1, 2016 and May 1, 2018. These data were combined with standard Australian unit costs to calculate the expected costs per patient over a 12-month period, as well as the overall population cost for treating crusted scabies. FINDINGS: The expected health care cost per patient diagnosed with crusted scabies is $35,418 Australian dollars (AUD) (95$27,000 to $43,800), resulting in an overall cost of$1,558,392AUD (95% CI: $1,188,000 to$1,927,200) for managing all patients diagnosed in the Northern Territory in a given year (2018). By far, the biggest component of the health care costs falls on the hospital system. DISCUSSION: This is the first cost-of-illness analysis for treating crusted scabies. Such analysis will be of value to policy makers and researchers by informing future evaluations of crusted scabies prevention programs and resource allocation decisions. Further research is needed on the wider costs of crusted scabies including non-financial impacts such as the loss in quality of life as well as the burden of care and loss of well-being for patients, families and communities

Reduction of predictive uncertainty in estimating irrigation water requirement through multi-model ensembles and ensemble averaging

Irrigation agriculture plays an increasingly important role in food supply. Many evapotranspiration models are used today to estimate the water demand for irrigation. They consider different stages of crop growth by empirical crop coefficients to adapt evapotranspiration throughout the vegetation period. We investigate the importance of the model structural versus model parametric uncertainty for irrigation simulations by considering six evapotranspiration models and five crop coefficient sets to estimate irrigation water requirements for growing wheat in the Murray–Darling Basin, Australia. The study is carried out using the spatial decision support system SPARE:WATER. We find that structural model uncertainty among reference ET is far more important than model parametric uncertainty introduced by crop coefficients. These crop coefficients are used to estimate irrigation water requirement following the single crop coefficient approach. Using the reliability ensemble averaging (REA) technique, we are able to reduce the overall predictive model uncertainty by more than 10%. The exceedance probability curve of irrigation water requirements shows that a certain threshold, e.g. an irrigation water limit due to water right of 400 mm, would be less frequently exceeded in case of the REA ensemble average (45%) in comparison to the equally weighted ensemble average (66%). We conclude that multi-model ensemble predictions and sophisticated model averaging techniques are helpful in predicting irrigation demand and provide relevant information for decision making

Australian utility weights for the EORTC QLU-C10D, a multi-attribute utility instrument derived from the cancer-specific quality of life questionnaire, EORTC QLQ-C30

Background: The EORTC QLU-C10D is a new multi-attribute utility instrument derived from the widely-used cancer-specific quality of life questionnaire, EORTC QLQ-C30. The QLU-C10D contains ten dimensions (Physical, Role, Social and Emotional Functioning; Pain, Fatigue, Sleep, Appetite, Nausea, Bowel Problems), each with 4 levels. To be used in cost-utility analysis, country-specific valuation sets are required. Objective: To provide Australian utility weights for the QLU-C10D. Methods: An Australian online panel was quota sampled to ensure population representativeness by sex and age (≥18y). Participants completed a discrete choice experiment (DCE) consisting of 16 choice-pairs. Each pair comprised two QLU-C10D health states plus life expectancy. Data were analysed using conditional logistic regression, parameterised to fit the quality-adjusted life-year framework. Utility weights were calculated as the ratio of each QOL dimension-level coefficient to the coefficient on life expectancy. Results: 1979 panel members opted-in, 1904 (96%) completed at least one choice-pair, and 1846 (93%) completed all 16 choice-pairs. Dimension weights were generally monotonic: poorer levels within each dimension were generally associated with greater utility decrements. The dimensions that impacted most on choice were, in order, Physical Functioning, Pain, Role Functioning and Emotional Functioning. Oncology-relevant dimensions with moderate impact were Nausea and Bowel Problems. Fatigue, Trouble Sleeping and Appetite had relatively small impact. The value of the worst health state was -0.096, somewhat worse than death. Conclusions: This study provides the first country-specific value set for the QLU-C10D, which can facilitate cost-utility analyses when applied to data collected with the EORTC QLQ-C30, prospectively and retrospectively