Catalyzed by COVID-19 and the Russia–Ukraine conflict, oil prices fluctuate dramatically on the worldwide market. Both international oil price changes and carbon tax policies have a direct impact on energy costs, thus influencing energy security and emission reduction impacts. Therefore, assessing the interaction effects of international oil price variations and carbon tax policies can assist in resolving the competing challenges of energy security and carbon emission reduction. The impact of international oil price fluctuations on China’s energy–economic–environment system under the baseline scenario and carbon taxation scenario is analyzed by constructing a computable general equilibrium model comprising six modules: production, trade, institutions, price, environment, and equilibrium. The findings indicate that, in addition to reducing high-carbon energy consumption and increasing demand for clean electricity, rising international oil prices have a negative effect on real GDP, resulting in lower output in sectors other than construction, and a positive effect on the environmental system by driving carbon emission reductions. In contrast, decreasing international oil prices have the opposite effect. Nevertheless, the impact of rising and decreasing international oil prices is asymmetrical, with the positive shock effect being smaller than the negative. The carbon tax policy can effectively offset the increase in carbon emissions caused by the decline in international oil prices, which is conducive to promoting the development of clean energy, while simultaneously causing an increase in product prices and arousing a contraction in consumer demand, which has a limited negative impact on the macroeconomy. Oil is a critical resource that ensures a country’s economic and social growth and plays a vital role in production and survival. Oil security is intimately tied to a country’s future and fate . As peopThe international volatility of oil prices is the direct source of oil security issues . China’sOn the other hand, the ongoing discussion over global climate change will influence oil demand forecasts. If the world continues on its present trajectory of carbon emission intensity and greenhouse gas rises, one-third of the global population might experience excessive heat by 2070, according to Xu et al. . In thisExperience has demonstrated that a variety of climate policies, such as GHG emission reduction targets and emission regulations, can serve as essential incentives to combat climate change but can be counterproductive if the implementation process is flawed . Carbon However, current research tends to concentrate on the effects of oil price fluctuations and carbon tax policies on energy consumption, economic factors, and environmental factors, respectively, under the assumption of constant external conditions ,16. ThatThis research is organized as follows. International oil price fluctuation has been the focus of a sizable number of studies to date and these studies’ breadth and research perspectives have been growing, mostly in relation to the following issues.The first category investigates how changes in the price of oil on the global market affect energy security, energy structure optimization, and energy consumption. The short-term unidirectional association between oil prices and the use of renewable energy was validated by Brini et al. . Energy The second category focuses on the effects of fluctuations in the price of oil on the macroeconomy and different industrial sectors. Significant nonlinear impacts of international oil prices on Chinese economic development and inflation were discovered by Du et al. . More thThe third category focuses on examining how fluctuations in the price of oil on a global scale affect environmental problems such as air pollution. In ten nations with large carbon emissions, including China, the United States, and Canada, Ullah et al. carefully examined the asymmetric impacts of oil price variations on environmental pollution . InternaResearch on carbon taxes has increasingly expanded from a solely environmental perspective to various aspects, such as energy and economy, with a primary focus on the following.The first category looks at how carbon tax impacts several aspects of energy use, including energy mix and production efficiency. Di et al. investigated how two distinct carbon tax scenarios might affect the Irish energy industry . The timThe second category evaluates the macroeconomic effects of the carbon price as well as its effects on small businesses. The effects of the carbon price on the Chinese economy and the protective effect of supplementary measures were studied by Lu et al. . In orde2 emissions in Finland, according to Lin et al. [The third category is devoted to research on carbon tax policies’ ability to reduce carbon emissions and thus enhance environmental quality. Carbon taxes considerably slowed the development of per capita COn et al. . A steppn et al. . Howevern et al. .However, previous research on the effects of oil prices on the energy, economic, and environmental systems can help China strengthen its ability to withstand fluctuations in oil prices in a complex environment for economic policy and offer useful theoretical support for the steady growth of China’s economy. For the purposes of reaching carbon peaking and carbon neutrality as well as for comprehending its function in climate governance, historical research on the effects of carbon tax policy on energy, economic, and environmental systems is crucial. It is not difficult to discover, nevertheless, that there is no research literature on the combined synergistic effects of international oil prices and carbon tax policies on energy, the economy, and the environment. The hunt for the ideal timing to implement carbon tax policies necessitates ongoing attention and analysis, especially now that changes in the price of oil internationally have become commonplace. Therefore, this paper is an addition to the relevant research on the effects of carbon tax policies on different sectors of the national economy in the context of the volatility of the international oil price. This paper will build a computable general equilibrium model taking into account six modules: production, trade, institutions, price, environment, and equilibrium. It will then systematically analyze the synergistic impact mechanism of the international oil price fluctuation and carbon tax policy on China’s energy–economy–environment system.Computerized general equilibrium models are able to integrate the analysis of various national economic sectors and economic cycles and investigate the mechanisms that drive and restrain one another. Therefore, to study the synergistic influence mechanism of the international oil price fluctuation and carbon tax policy on China’s energy–economy–environment system, a computable general equilibrium model will be built, taking into account six modules: production, trade, institutions, price, environment, and equilibrium.As seen in The production function used for the synthesis of the inputs of each layer is as follows.In the trade module, it is assumed that domestic producers adhere to the maximization of profit principle when determining the optimal quantity of domestic goods supply and exports and that domestic demanders adhere to the maximization of utility principle when determining the optimal quantity of domestic goods demand and imports.CES production function is used:The pricing module has three primary categories of prices: import and export commodity prices, domestic consumer commodity prices, and factor prices.The institutional module consists of the income and expenditure functions of residents, firms, and the government, where the consumption function of inhabitants is chosen as the Stone–Gailey utility function and the remaining functions are linear functions with proportional coefficients.The environmental module evaluates the pollutants emitted during production and consumption by each economic sector. As a calibration in this paper, carbon dioxide is chosen as a common environmental variable. It also relies on Mardani’s analysis of carbon dioxide emissions, which defines carbon emissions as stemming mostly from the final consumption of carbon-containing products.The equilibrium module consists of labor market equilibrium, capital market equilibrium, and commodity market equilibrium, whereas the closed function module comprises savings–investment equilibrium, government balance of payments, and balance of payments.China Statistical Yearbook and China Energy Statistical Yearbook, this paper constructs a social accounting matrixa necessary for the computable general equilibrium model to examine the effect of international oil price fluctuations and carbon tax on China’s energy–economic–environment system. IPCC Guidelines for National Greenhouse Gas Inventories.As computation inputs, the computable general equilibrium model uses the social accounting matrix and related parameters. Using the input–output table of 2020 as the basis of calculation and GTAPAgg software to adjust the input–output table into 11 sectors according to the research needs and industrial characteristics, and with the assistance of relevant data published in the The synergistic effects of changes in international oil prices, an external economic variable, and carbon tax policies on energy, economy, and environment are examined in this research using scenario analysis. This essay fully considers the significant contemporary influences on the variation in international oil prices. First, the new crown epidemic’s onset has resulted in a sizable number of global company closures, job losses, a reduction in social consumption, and a sizable decline in international oil demand, which has exacerbated the global oil oversupply and caused international oil prices to remain at low levels. The second is the ongoing war between Russia and Ukraine. As a result of sanctions placed on Russia by the U.S. and other Western nations, oil prices have skyrocketed globally.Additionally, the carbon tax, a price-based approach to carbon pricing, is becoming more and more popular throughout the globe due to its special ability to support governance of the energy transition and climate change. It has also achieved some progress in its implementation. In light of its economic and social development stage and mounting pressure from international climate challenges, China has made carbon peak and carbon neutrality its long-term policy goals. As a result, China needs to introduce carbon tax policy tools to broaden new concepts in carbon governance.The following policy scenarios are outlined in detail.Scenario 1: As a result of the Russia–Ukraine conflict’s geopolitical influence, international oil prices continue to grow by 10%, 20%, or 30%.Scenario 2: The COVID-19 epidemic causes a huge number of worldwide businesses to close, employees to lose their employment, societal consumption levels to decline, international oil demand to collapse, and international oil prices to decrease by 10%, 20%, or 30% of the shock effect.2.Scenario 3: Based on Scenario 1, a carbon tax policy is introduced for carbon emissions resulting from the use of fossil energy at a rate of 30 RMB per ton of CO2 carbon tax is placed on carbon emissions induced by the use of fossil fuels.Scenario 4: Based on Scenario 2, a 30 RMB/ton COA carbon tax would make consuming fossil fuels more expensive and have the effect of reducing energy use. In Scenarios 3 and 4, it is clear that the consumption of coal and oil and natural gas both dramatically decline following the implementation of a carbon price, but to a lesser amount. Consumption of thermal power and clean electricity both rise, with thermal power’s replacement impact being the most prominent. In the long run, the cost of thermal power will quickly grow as a result of the higher carbon tax, and this, along with the rise in the price of thermal energy, will significantly lessen thermal power’s competitive edge when the cost and price of renewable energy both remain the same or slightly fall. The introduction of the carbon pricing policy will ultimately impede the growth of thermal power. The whole cost of utilizing synthetic energy, which includes direct carbon costs and energy prices, is what determines energy consumption. The carbon tax not only accounts for the cost of carbon emissions directly in the cost of production but also indirectly influences changes in energy prices through transmission into the energy sector’s cost of production. To save costs, businesses will develop or use alternative energy sources to replace fossil fuels, which will help China modify its existing energy balance of coal consumption as the major source of energy and oil consumption as a supplement. The effects of a tax on carbon are not evenly distributed. When oil prices go down, the policy of imposing a tax on carbon can cut energy use in a more efficient manner while also offsetting the increase in consumption of fossil fuels that was caused by the rise in oil prices. Therefore, there is a golden opportunity to establish a carbon tax policy when international oil prices are low and continue low.Due to its high crude oil imports and reliance on outside markets, China’s economy is particularly susceptible to changes in the price of oil globally. When the price of oil goes up or down, so does the total social investment. From the standpoint of cost transmission, changes in oil prices will have an immediate effect on the cost of oil for public transportation, machinery, and construction vehicles, which in turn will affect the cost of output in industry and manufacturing. Because of the interconnected nature of the oil and gas sectors, shifts in the price of oil will have repercussions for the natural gas sector, which in turn will influence the oil industry’s downstream businesses. As a result, a significant shift in oil prices will have a stronger effect on investment in adjacent industries since it will alter investors’ expectations of oil prices. Resident income, enterprise revenue, and government income all move in the same direction as international oil prices. However, resident income fluctuates the least, while enterprise income fluctuates the most, and the impact is higher when international oil prices decline than when they rise. Residents’ income is affected by the prices of labor, energy, capital, and other factors of production, and there is a substitution relationship between these components. Changes in energy demand brought about by fluctuations in international oil prices will create fluctuations in the relative pricing of energy and other production components. Corporate revenue is affected by fluctuations in the pricing of capital elements and sectoral gains or losses resulting from volatility in international oil prices. Government revenue changes are related to fluctuations in resident income, firm income, and the prices of other categories. The resident savings, company savings, and government savings exhibit the same direction and size of change as the respective income. Government consumption decreases as international oil prices fall and domestic consumption goes in the opposite direction of international oil prices. The majority of the oil used by people goes toward fueling cars. New energy cars have not caught on in China just yet, causing it to be challenging to discover viable alternatives for auto fuel. As a result, people will limit their use of automobiles and, in turn, lower their oil use as a direct result of the rise in oil prices.The nominal GDP suffers a decline in both Scenario 3 and Scenario 4. This is a result of the fact that nominal GDP takes into account both labor and capital as well as indirect tax receipts. A decrease in capital revenue and no change in labor revenue is the result of the introduction of a carbon tax, which causes an overall increase in the price of output and an overall decrease in the amount of output. Even if indirect tax income is growing, its proportion of nominal GDP is small. As a direct consequence of this, nominal GDP as a whole experiences a decrease. The real GDP, which is calculated by factoring in investment as well as consumption and net exports, is falling. The implementation of a fee on carbon causes a reduction in residential consumption. Government consumption increases, but due to the low proportion of government consumption in total consumption, Overall, there is a decline in consumption. The carbon tax causes an increase in domestic savings in addition to an increase in the savings of both the government and foreign countries. Investment and savings are equivalent. On the other hand, corporate savings, which make up the bulk of total savings, decline. Total social savings, i.e., total social investment, falls. Because of the carbon tax, the price of domestic items rises relative to the price of international products, while the price of foreign products does not change. This results in fewer net exports. The application of a carbon tax increases government revenue and government transfer payments to households, hence increasing the income of inhabitants. Resident consumption is positively affected by the higher income on the one hand and negatively affected by the carbon tax that raises the price of the product, on the other hand, showing an overall decrease. In general, a carbon tax is advantageous since it increases government income and government investment, hence stimulating economic development. The installation of a carbon tax, on the other hand, is damaging to the incentive for private investment, hence retarding economic growth.The upstream and downstream of the industrial chain in many industries will be impacted by swings in international oil prices as China’s industrial production capacity expands, bringing increased uncertainty to the operation of linked firms. In Scenario 3 and Scenario 4, the output of agriculture, light industry, and the service industry increase, while the output of heavy industry, construction, and transportation industries decline by varying degrees, with heavy industry and transportation industries experiencing the greatest declines. This is because, on the one hand, heavy industry and transportation have a high energy demand and a large proportion of energy in their inputs, and the imposition of a carbon tax results in a substantial increase in their production costs and a decrease in their supply. Agriculture, light industry, and service industries have relatively small cost increases, therefore the decline in supply is relatively low, and the relative increase in structural prices is small, resulting in an increase in demand. The combined effect of supply and demand results in varying degrees of output growth for the industry. In order to shift the industry’s energy consumption habits from fossil fuels to renewables, a considerable boost from the carbon tax is required. The industry’s affordability and the chilling effect of a carbon tax on growth must be taken into account at the same time. The competitiveness of businesses and the growth of economies may be hampered by a carbon tax that is too high.Examining Scenarios 3 and 4, this paper finds that carbon tax policies can successfully reduce the quantity and intensity of carbon emissions. Thus, a carbon tax is an efficient tool for achieving emission reduction goals and limiting fossil energy usage while incentivizing green energy consumption. When oil prices continue to decline, the implementation of a carbon tax policy can effectively offset the rise in carbon emissions caused by the decline in international oil prices. Therefore, China should take advantage of the period of low oil prices to speed up its green growth so that it may actualize ecological civilization and construct a beautiful country. China should hasten the process of energy reform with the aid of a carbon tax policy to advance energy cleanliness and sustainable development during a period of low international oil prices. China has completely launched the market for trading carbon emissions but has not yet implemented a carbon price. Among China’s carbon peak and carbon neutral targets, the goal of carbon neutral in terms of net carbon emissions is definite, as it is to achieve break-even in carbon emissions; however, there is no document that specifies the specific peak target of total carbon dioxide emissions for carbon peak targets. On the basis of the existing carbon market, a carbon tax should be introduced at the appropriate time to form a synergistic combination of policies to, directly and indirectly, regulate carbon emissions, which can effectively reduce the pressure of emission reduction in the carbon market and help achieve the goal of carbon neutrality while promoting the reduction of the peak of total carbon dioxide emissions.The mechanism of action of international oil price fluctuations on the energy–economy–environment system is extremely complex due to the substitution and complementarity of different energy sources as well as the differences in the direction of fluctuations of different energy sources influenced by international oil prices. In accordance with the mechanism of action of a combination of policy scenarios affecting energy price volatility elements, such as international oil price swings and greater environmental costs of fossil energy due to the introduction of carbon taxes, the following findings are drawn.(1)China’s energy imports are substantial and international energy prices are dominated by oil prices. Therefore, an increase in international oil prices leads to an increase in domestic fossil energy prices, which reduces the demand for fossil energy and increases the demand for clean power, resulting in a reduction in overall energy consumption. In contrast, dropping international oil prices have the opposite effect.(2)A rise in international oil prices increases production costs for firms and produces inflation, resulting in a decrease in local output and investment. A significant decline in international oil prices, on the other hand, results in deflation, which has a negative impact on domestic output and investment. A rise in international oil prices is damaging to labor-intensive businesses, such as light industry and agriculture, whereas a decline in international oil prices will enhance output in industries other than construction.(3)An increase in international oil prices can mitigate the environmental pollution caused by carbon emissions to some extent, whereas a decrease in international oil prices will result in an increase in the total and intensity of China’s carbon emissions, which is not conducive to China achieving its carbon peak and carbon neutral goals. The influence of international oil price fluctuations in both directions on carbon emissions is not symmetrical.(4)The carbon tax has a significant impact on reducing fossil energy demand and carbon emissions as well as promoting the demand for clean electricity, and the linkage mechanism between carbon tax and international oil price fluctuations is conducive to enhancing energy saving and emission reduction effects. In other words, when the international price of oil declines dramatically, the carbon tax rate should be increased proportionally, and vice versa.The following recommendations are offered to China, based on the study’s findings, in order to mitigate the impact of worldwide oil price variations on the energy–economy–environment system from multiple viewpoints.(1)Encourage the optimization and modernization of energy structure to lessen reliance on oil imports. Reduce the share of high-carbon energy consumption in the energy structure by supporting the optimization and upgrading of the energy structure. Alternately, the market and policy instruments can direct the formation of a reasonable pattern of energy usage.(2)Implement a multi-directional and multi-channel pattern of oil delivery in order to mitigate the risk of abrupt shifts in international relations and frequent regional conflicts. Additionally, pay particular attention to the trend of oil price fluctuations. When international oil prices decline, it is vital to sustain the rate of oil exploration and development in order to enhance the domestic oil supply capacity and increase oil imports in order to increase strategic oil reserves. When oil prices are high, it is important to sell at the proper time in order to lower the cost of oil imports, boost the pricing power of international oil prices, and mitigate the impact of growing international oil prices on the domestic economy.(3)When creating legislation about climate change, it is important to consider the rippling impact of oil prices. Continue to reinvent the system of carbon tax regulation and perform a complementary function to carbon emissions trading. In addition to limiting fossil fuel usage, the carbon tax should attempt to increase the efficiency of fossil fuel utilization. The government should assist manufacturers who optimize oil use patterns and create fossil energy technologies in order to further optimize the energy structure, reduce energy intensity, and speed up the greening of the economy.(4)Against the backdrop of persistently low international oil prices, the government is compelled to employ policy instruments, particularly environmental levies or more direct carbon tax policies. By increasing the price of fossil fuels to lessen the environmental effect caused by their increased consumption, the transition to a low-carbon energy system is facilitated.


The elderly population is increasing worldwide. Dietary habits play a crucial role in prolonging life and preventing diseases. This cross-sectional study sought to investigate the dietary habits of the elderly in the Kwahu South District of the Eastern Region of Ghana and further ascertain the factors that constitute nutritional challenges among this group. A mixed method approach was used for the study. A questionnaire and focus group discussion guide were used to solicit data from study participants. A total of 97 participants made up of 59 males and 38 females participated in the study. Data on food habits reveal that staple food consumption especially those grown within the study area is common. Rice (34.1%), game meat (47.1%), banana (63.9%), and garden eggs (27.8%) were the commonly consumed foods by frequency. Mood (41.2%) and stress (24.8%) were identified as the most predominant determinants of food habits. Poly medication, toothache and loss, immobility, and financial and technological challenges were amongst the nutritional challenges mentioned by the elderly in this study. Results from the focus group discussion revealed high nutrition knowledge among the elderly through factors such as financial constraints that were mentioned as a barrier to the translation of this knowledge into practice. Strengthening of existing interventional programmes such as the Livelihood Empowerment Against Poverty and social interventions is needed to improve the dietary habits and nutritional intakes of the elderly. The elderly population is increasing around the globe. Data from the World Health Organization indicate that the proportion of the global population who are 60 years and older is 1 billion—the figure is projected to reach 1.4 billion by the year 2030 . The WorIn Ghana, there has been a consistent increase in the number of older persons and the country has one of the highest percentages of the older population in sub-Saharan Africa. The proportion of the elderly population increased from 4.9% in 1960 to 7.2% in 2000 .Aging as a gradual and continuous process is characterized by a natural gradual decline in bodily functions of a person in early adulthood . This deThis cross-sectionalmixed-method study, therefore, assessed the dietary habits and nutritional challenges of older adults in the Eastern region of Ghana.This was a cross-sectional study in which we employed a mixed-method approach to obtain data on the dietary patterns and nutritional challenges of the elderly. The use of the mixed-method approach was to allow us to support quantitative data obtained with an in-depth analysis of qualitative data. Furthermore, the aim of employing a mixed-method design was to gain credible and valid research findings by using multiple approaches and multiple sources of information to overcome biases , 26.This study was conducted in the Kwahu South District of the Eastern Region of Ghana. The district is amongst the mountainous areas of the Eastern region of the country. The area has a natural environment where subjects typically go about their daily activities, which include but are not limited to agriculture, tourism, pottery, fishing, hunting, and petty trading. Food types in the district primarily encompass various tropical staple food crops , legumes, vegetables, and fruits. Though the population of the area is mainly youth similar to other regions of the country, data from the 2010 Ghana population and housing census indicate that the Eastern region is among the regions in the country with a high proportion of older adults. Approximately, 43% of the older population in Ghana live in three regions—the Ashanti region, the Greater Accra region, and the Eastern region . The AshData were collected from 103 persons aged 65 and above in the Kwahu South District of Ghana. A multistage sampling approach (simple random and purposive) as demonstrated by Palinkas et al.  was adopA structured questionnaire was used to collect the quantitative data. The questionnaire consisted of five distinct sections. The first section captured the sociodemographic data of participants, and the second part of the questionnaire consisted of a list of foods to which participants were to indicate which was most frequently consumed. The foods were categorized under four (4) food groups, namely, animal and animal products, cereals, vegetables, and fruits. This simple food frequency questionnaire was used to lessen the burden of recall. Data on the general health and nutritional challenges were collected in the third and fourth sections, respectively, while the last section was used to collect information on the determinants of food intake. These sections were made up of options to which participants were to indicate which frequently applied to them in a form of a Likert scale. The qualitative data were collected using an observational checklist and a focus group discussion guide. Instruments were validated by face, content, and construct after careful scrutiny by colleagues, research supervisors, and senior lecturers who are expects in food and nutrition research. After pilot testing and analyses, the instruments were found to be reliable, with a Cronbach alpha coefficient of 0.83.Two trained research assistants were selected to assist with data collection based on their experience in nutrition research, aging issues, and communication skills. The questionnaire was interviewer-administered and the questions were translated verbatim into the local language of the participants. A focus group discussion guide was used to collect qualitative data on health and nutritional challenges. Participants were then asked questions to gain insights into the challenges they face in meeting their food needs. The FGD took approximately one hour to complete. Participants were assigned alphabets from A-F to keep the information obtained confidential. The session was both audio-taped and transcribed by the assistant moderator for the analyses and discussion.Quantitative data collected were analysed using Statistical Package for Social Sciences (SPSS) version 20. Descriptive statistics was used to analyse categorical data which are presented in frequencies and percentages. The qualitative data from the focus group discussion were transcribed verbatim from the tape recordings. The FGD was conducted in Twi which is the commonest local language in the study area and subsequently transcribed into English by research and language experts into electronic and printed forms for thematic analysis in order to minimize data loss. The transcribed data were read several times by researchers prior to data analysis. This was carried out to identify recurrent themes in the data. The themes were used to create a coding system including coding categories and a description of each category to guide the classification of responses to codes. The researcher and her two trained research assistants coded all transcripts, assigned coding categories to responses, and then evaluated all discrepancies in coding. Only minor discrepancies were observed, which were resolved by examining the original data and developing a consensus on interpretation. The qualitative software package CDC EZ-test version 3.10 C was used to facilitate data management and coding. Reliance on text-tagging software program helped to code and categorise responses in the original transcripts, thus providing a direct means by which emergent themes could be checked against and identified with the source material. Findings were presented as a description of recurrent themes, as well as a reporting of the frequencies of each code, using the FGD as the unit of analysis. Thus, the themes were developed inductively and explanatory accounts were developed in recursive engagement with the data set. Specifically, deviant cases or instances which did not conform to the accounts of the data were used to inform and amend these explanations , 31. ExtThe determinants of food habits among study participants were mood (41.2), stress (24.8%), and culture (23.3%). Financial constraints (43.3%) were the challenge most indicated by participants followed by health challenges (25.8%). Loss of senses and mobility challenges were reported by 13.4% and 10.3% of participants, respectively. n = 6) was conducted to explore in-depth health and nutritional challenges of the elderly. Researchers analysed the focus group discussion around three coded themes: clinical and physical health status of the elderly, food habits (food choices and drivers of food choice), and nutrition knowledge.The focus group discussion , prostate diseases (D), diabetes , and hypertension . Participants reported that clinical and physical changes evidently influenced their abilities to live independently, initiate and maintain physical activity, and socially engage. Additionally, participants hinted that such changes have led some of them to intensely use community health facilities and depend on others for survival. Participant E describes his situation as follows:“I prefer dried fish and boiled animal foods, slightly cooked and raw vegetables, squeezed and blended fruits, as well as boiled, pounded, and mashed roots and tubers.”Participants were also asked to indicate which foods they often consumed. The foods that were frequently mentioned were game, fish, snails, and eggs. Of the fruits and vegetables groups, those that participants often consumed were banana, orange, pineapple, mango, avocado, okra, garden eggs, and cocoyam leaf (“kontomire”). Participants further explained that these food choices are driven by the taste and smell of the food, cost, their mood, culture, and appetite. Participant A made the following statement:“We know that fruits and vegetables are good for our health and can prolong our lifespan, but they are very expensive and as such we eat them as and when they are in season.”Participants also affirmed that mental health challenges such as the feeling of apathy, phobic disorders, cognitive challenges, sexual dysfunction, loneliness, maltreatment, and feeling of neglect make them lose interest in shopping for food, food preparation, and eating. Respondents also mentioned financial constraints as a barrier to the attainment of their nutritional needs. This was captured from a participant as follows:“To tell you the truth we often eat fruits only when we can afford or have them presented to us as gifts and/or when these fruits are in season. Honestly, this situation is scary yet it is the reality.”Another participant also explained it as follows:Participants viewed fruits, vegetables, low-fat foods, and animal foods particularly game as healthy and vital for graceful greying. Fruit and vegetable consumption was frequently cited as being healthy, and a preference for vegetables over fruits was noted; many indicated this was due to the high cost and unavailability of fruits. Some participants noted that vegetables helped their vision and help built their resistance against diseases. There was consensus among participants that fat and oils found in red meats, butter, and whole milk must be avoided due to their adverse effects on human health. All participants were also made to mention the sources of their food and nutrition knowledge. The commonest sources cited were parents, health professionals, food labels, and the media. However, the vast majority of participants confirmed that parents and/or family played a crucial role in instilling knowledge of food habits in them. Beyond these, specific sources of nutrition knowledge identified by participants were media sources such as cooking shows on radio and television , recipe books, magazines, and newsletters , previous work experience in food-related jobs (D) and food labels .“I learnt about food preparation and its side effects extensively from my parents and female relatives at home.”Participant B stated as follows:“I watched the TV cooking show “Onga Kitchen” and I started eating healthy.”Participant E captured it as follows:“Breakfast is the most crucial meal of the day so I make sure to prepare a “healthy breakfast” for my family to start the day.”Again, participant A reported what she heard on the radio:Participants were of the view that nutrition knowledge helped them to eat healthy and live longer. Most participants emphasized that “healthy foods” protect them from illness, as well as prevent overweight and obesity and food-related diseases such as heart attack, diabetes, and hypertension. Focus group discussion members mentioned that processed and canned foods are unhealthy.“When you eat something unhealthy, you become moody and tired because the fat gets retained in your body and fills your heart and clogs your blood vessels.”Participant D explained as follows:Participants further indicated that healthy eating helped them to gain more energy, stay younger, and improve their self-esteem, and they are able to focus on tasks with less stress. Related to this, some members said it was vital for them to eat healthy to serve as role models for other family members.“I want to eat healthy so I become a role model for my children so they enjoy healthy food options.”For example, participant F reported as follows:The main aim of this study was to assess the dietary habits of the aged and the nutritional challenges they face. Three main findings emerge from this study and they are discussed as follows.Staple food consumption is high among study participants especially those foods that are common within the study area. For instance, game which was indicated as the frequently consumed animal source of food is not uncommon in the Eastern region . Data frFindings further revealed that mood, stress, and culture were the most selected predictors of food choice. Findings from a study conducted among women by Leeds et al.  found thAdditionally, the prevalence of physical and clinical challenges can affect the mood of the elderly and pose a nutritional challenge to the elderly by affecting their psychological and mental health and result in polypharmacy. Some medication may interfere with appetite and even nutrients consumed and as such have an impact on dietary habits and nutritional status. This deepens the need to implement preventive nutritional programmes at early stages that have the potential to avert the development of chronic diseases in old age. Tooth loss can result in dysphagia which seriously threaten the nutrition of the elderly .Finally, resource constraints such as financial challenges can lead to poor nutritional choices even in the face of high nutritional knowledge. Price is one of the critical predictors of food choice and influences consumer purchasing and consumption behaviour . Thus, pLongitudinal studies are needed to confirm the findings of this study and also provide compelling evidence on the nutritional status of the geriatric population, the nutritional challenges they face, and how improvement in their economic status impact their overall nutrition.This study assessed the dietary habits and the nutritional challenges of the elderly in the Eastern region of Ghana. Data from the study show that there is a high consumption of staple foods among study participants especially those that are grown within the study area. Financial and polypharmacy, technological challenges, and toothache are prominent issues that affect the nutrition of the elderly. Additionally, despite high nutrition knowledge of the benefits of fruits and vegetables, financial constraints, and their high cost is a barrier to their consumption. Social interventions such as the LEAP programme should be expanded to provide food assistance consistently to the elderly. Social programmes are also required to ameliorate the feeling of loneliness, stress, and mood challenges.


This study focuses on the perception of ethnic foods by European consumers. The aim of this work is to enrich the literature on the analysis of consumer perception of ethnic foods by focusing on the socio-demographic characteristics of consumers, the possible role played by product attributes, psychographic characteristics, and willingness to pay for these products, specifically date fruits. We surveyed a representative sample of 1123 Italian and French consumers. Using an ordered logit model, we found that, as for any other product, geographical indication, region of production, organic character, and fair trade are attributes that individuals consider in their purchase decisions for ethnic foods. Similarly, country of origin is a source of quality for ethnic foods such as dates. The results reveal that women, more educated individuals, and Generation Z  have a higher willingness to pay for organic, fair trade, and GI-labeled ethnic foods. Finally, this willingness to pay is driven more by product knowledge than by cognitive closeness to the ethnic food. Industrialization, urbanization, economic development, and globalization of markets have led to rapid changes in diets and lifestyles . Food prThe literature shows that Europeans prefer domestic products to imported products in general. Nevertheless, there are some studies that show that for imported products, when looking at specific characteristics such as organic, fair-trade, and geographical indication, there is a high attention that is paid by European consumers ,8. HowevThere are studies that give indications on consumer preferences towards the imported food. Indeed, Thorgersen et al.  show on Strictly speaking, ethnic foods are defined as originating from the heritage, the culture of an ethnic group, a group that uses their knowledge, local ingredients from plant and/or animal sources . We consFew studies have investigated consumer behavior towards ethnic products and the effect of different labels on the preference of these products in Europe. Migliore et al.  investigThe classical framework of consumer behavior proposes that food choices are the result of considering intrinsic  ,12 and eStudies in non-European countries also show variation in consumer preferences by country of origin for imported products. Menapace et al.  show thaConsumer preferences and behavior patterns are influenced by a variety of factors. In most studies of consumer attitudes and purchasing behaviors, the influence of demographic characteristics has been used to better explain the results and to determine the influence of personal characteristics on attitudes and behaviors, although this is not necessarily the primary objective of these studies . While sIn addition to socio-demographic characteristics, psychographic characteristics are variables that also influence consumer purchasing behavior. Several studies show the effect of psychographic characteristics on consumers’ purchasing behavior toward imported foods ,26,27. WThe purpose of this work is to enrich this new stream of literature on the analysis of consumer perception of ethnic products by focusing on the socio-demographic characteristics of consumers by explicitly considering the possible role played by product attributes, psychographic characteristics, and willingness to pay for these products. For this, we investigate whether (a) consumers’ perceptions of ethnic product attributes differ according to socio-demographic and psychographic characteristics, (b) socio-demographic conditions and psychographic characteristics influence the willingness to pay for these ethnic products, (c) there are differences in consumers’ perceptions of the quality of ethnic products between different countries of origin according to socio-demographic groups, and (d) the willingness to pay for ethnic foods differs according to the country of origin and the labels considered.To investigate how consumer choices of so-called ethnic products are determined in Europe, an online survey was conducted in France and Italy. The content validity of the questionnaire was ascertained using, first, a pre-test to collect elements to assess completeness and clarity of the questionnaire. In particular, we convened a limited audience (about 30 people) to understand if the survey presented potential inconsistencies. This allowed us to remove ambiguity in the questions. Second, a pilot survey on a sample of 50 people in order to verify the coordination between the survey and the correct functioning of the questionnaire. The responses obtained from the pilot survey were excluded from the overall data analyzed.The final dissemination of the questionnaire was carried out by a survey agency (IPSOS) that guaranteed the representativeness of the samples in France and Italy. The final data of the French sample were collected during the month of July 2021. The data of the Italian sample were collected during the month of October 2021.It is important to underline that the study did not require ethics committee approval for the survey. In particular, in the study, there was no actual or potential harm to the participants. Participants answered an anonymous online questionnaire. All personal data were treated anonymously, without any possibility on the part of the authors to identify the respondents. There was no way to identify the respondents from the data. The interviewed were informed that their participation was strictly on an anonymous and voluntary basis and explicitly gave their consent by clicking a specific button and accepting to continue with the interview. A detailed privacy statement was given, and the respondents could access the online questionnaire only after accepting the stated privacy policy. The study does not require any ex ante categorization of the participants by race/ethnicity, age, disease/disabilities, religion, sex/gender, sexual orientation, or other socially constructed groupings. No question on sensitive issues  was asked.The two countries, France and Italy, were chosen because of their specific characteristics. Indeed, they are two European date fruits importing countries, but their cultural proximity with Mediterranean countries differs. French and Italian consumers have different levels of knowledge about ethnic products. For Italian consumers, date fruits are considered a more ethnic product than for French consumers. Italy has lower cultural proximity to the Mediterranean countries than France. This is due to the presence in France of many second-generation migrant nationals from date-fruits producing countries.The survey data were collected by interviewing 1000 individuals in France and 1000 individuals in Italy. We explicitly focus on the evaluations of current consumers and exclude non-buyers of the product under study. We therefore excluded 877 individuals and then had a total sample of 1123 European consumers. It is important to note that by excluding individuals who are not buyers, we are not able to assess whether they would derive any utility from the product. In that way, we are only exploring current perceptions of attributes by current consumers and not potential consumers or potential changes in perceptions that might be achieved through new information dissemination efforts.The edited questionnaire aimed to investigate the perception of European consumers towards an imported food product, dates fruits specifically. The starting hypotheses were:H1. Perceptions of ethnic product attributes differ across socio-demographic groups.H2. Consumers’ socio-demographic conditions and psychographic characteristics influence their willingness to pay for date fruits.H3. Differences in consumer perceptions of ethnic food quality should exist between different countries of origin according to socio-demographic groups.H4. The willingness to pay for ethnic food differs according to the labels considered and the origin of the product.The questionnaire used was therefore designed to test the hypotheses and is divided into three main parts. The first part focuses on the socio-demographic characteristics of the respondents .The second part focuses on the perception of the ethnic product (date fruits) and psychographic approach. In particular, this part of the questionnaire includes questions such as: “how often do you buy dates?” “How would you judge your knowledge of dates?” What is important to you when you buy date fruits: brand, variety, packaging, indication of origin, organic, fair trade, nutritional characteristics, or price?” The third part dealt with analyzing consumers’ willingness to pay for ethnic products. Specifically, this part of the questionnaire includes questions such as: “When you buy 250 g, what price are you willing to pay for these characteristics: brand, variety, packaging, indication of origin, organic, fair trade, nutritional characteristics, and price?” “When you buy 250 g of date fruits, what price are you willing to pay if they originate from Algeria, Tunisia, Iran, Morocco, Israel, Pakistan, Middle East (Saudi Arabia), or California (USA)?”More in detail, Particular attention was paid to psychographic characteristics such as respondents’ knowledge of the product (self-awareness) and their involvement in date fruits consumption (Cognitive closeness) . More spTo identify whether there is a classification of date fruits quality according to the country of origin of the date fruits, respondents were asked to rank the following countries according to their expectations in terms of date fruits quality: Algeria, Morocco, Iran, Israel Pakistan, Tunisia, Middle East (Saudi Arabia), and California (USA).To assess consumers’ willingness to pay for date fruits, participants were asked the price they would be willing to pay for 250 g of date fruits according to the type , the label  and the origin of the dates . For the choice of the price range, we checked the prices on the shelves of the main food retailers in Italy and France, on the wholesale markets, and on the internet portals Consumer choices of date fruits are modelled using a discrete choice model based on random utility, the ordered logit ,30,31.Unlike the OLS which treats the variable as if it were continuous or the multinomial logit which treats the variable as a nominal variable, we chose the ordered logit since it allows the ordinality of the attributes to be considered. As mentioned above, the attributes were evaluated using a Likert- scale from 1 to 5 which measures the degree of importance of each attribute. The ordered logit model assumes the existence of a latent variable—an unobservable and unmeasurable variable. This latent variable, in our case consumer preference, is expressed in terms of observable explanatory variables such as socio-demographic characteristics.The estimated model is therefore in the form:The Probit variant of this model was also tried, but its predictive power was inferior. According to Desaigues and Point , two proIn the following we first present the results of an overall analysis of consumer choice based on date fruits attributes. We then focused our analysis on the label attributes  using the willingness to pay, and finally, we examine the effect of country of origin on the perception of ethnic products.We recall that the sample size is 1123 individuals after excluding all non-buyers of date fruits. This means that we have excluded 43% of the base sample, and therefore, there are not so many people who buy dates. Moreover, the first analysis shows that there is no statistical difference between the two countries considered in the study.The analysis shows that all the attributes considered are significant. Cronbach’s alpha tests were performed on these attributes to assesses their reliability. It can be seen that the effect of socio-demographic groups on the attributes differs from one attribute to another. It is noted that the gender variable positively affects the nutritional characteristic criterion while the household size affects the Brand and Fair-Trade attributes. This means that women give greater importance to the nutritional characteristic of the date fruits than men, and the larger the household, the more likely it is to give greater importance to the brand of dates and the fact that the date is fair trade. It is also remarked that older respondents, i.e., those from the baby boomer generation and those with higher levels of education, place less importance on brand, variety, and price attributes than their younger and less educated counterparts.In relation to the respondents’ employment, there is a difference in the perception of the attributes according to each modality of the variable. For example, employed respondents gave high importance to the attributes organic, geographical indication, fair trade, nutritional characteristic, and brand, whereas retired respondents were only interested in geographical indication.Overall, these results show that there are differences in the way demographic groups perceive ethnic products.We notice that gender positively affects organic dates and fair-trade dates. This means that women have a higher willingness to pay for organic and fair-trade ethnic food than men.Millennials are the only generation that affects willingness to pay by label. We observe that the sign is negative for each label. This implies that the willingness to pay for labelled ethnic food of millennials is lower than that of generation Z.In relation to the employment of the respondents, we perceive a positive effect of individuals who work on the willingness to pay for dates of all labels and a positive effect of retirees only on dates labelled GI. Thus, employed individuals have a high willingness to pay for ethnic food of all types of labels, while retirees are only interested in ethnic food with a GI label.In addition to socio-demographic characteristics, psychographic characteristics (knowledge and cognitive closeness) also affect willingness to pay. Indeed, individuals with a high knowledge of dates showed a higher willingness to pay for all types of labels, but those with a cognitive closeness to dates had no major effect on willingness to pay.Consumers with cognitive closeness to dates showed a higher willingness to pay for dates from all origins, but those with high knowledge of dates had a higher willingness to pay only for dates from specific countries including Morocco, Israel, and the Middle East .There is a variation in the willingness to pay according to the different labels considered. Indeed, compared to individuals with a low level of education, individuals with a high level of education have an availability to pay whose probability increases whatever the type of label. This probability increases by 38.1%, 37.8%, and 41.8%, respectively, for GI, organic, and fair-trade dates.Similarly, individuals with a job have a higher probability of being willing to pay, which differs according to the type of label. These probabilities are 67.4%, 52.2%, and 42.9%, respectively, for GI, organic, and fair-trade dates.The willingness to pay for GI dates is higher than for organic dates for the most educated and employed individuals.In sum, the willingness to pay for dates differs according to the labels considered.The analysis according to the country of origin of the dates shows that gender and education level do not bring a significant difference in the perception that individuals have of the quality of dates according to their origin .Household size increases the probability that individuals have a better perception of date quality for dates from Algeria and the Middle East but decreases this probability for dates from Israel.However, compared to unemployed individuals, employed individuals and retirees have a significant and positive effect on the perception of the quality of dates from Israel. They therefore judge that date fruits from Israel are of better quality.Moreover, there is a difference in the willingness to pay according to the origin of the dates. For example, the probability of having a higher willingness to pay for students increases by 78.5% for dates from Pakistan and 55.9% for dates from California.Thus, it is noted that there are differences in consumers’ perceptions of the quality of dates from various countries of origin according to socio-demographic characteristics, and the willingness to pay for dates differs according to the origin of the dates.The results showed that all the stated hypotheses were validated and that ethnic food consumption, as date fruits, is affected by different factors. Many of them relate to the consumer’s perception of certain quality attributes. A major effect is shown by three credibility attributes, geographical indication, fair trade, and organic certification, highlighting that consumers assign a high level of importance to these attributes when deciding to consume ethnic foods.This result confirms the ones of other studies, showing that geographical indication is important in inferring food quality. Knowledge of the products’ origin is a factor that can potentially alter consumer perception of these products . The litThe literature also informs us that fair trade is an attribute used by consumers in purchasing decisions. Studies of consumer preferences for fair-trade products have found empirical evidence of willingness to pay for these products ,37,38. IAccording to the literature, organic certification is also considered as a significant predictor of consumer choice. The results of many empirical studies show a positive causal relationship between production processes and perceived environmental effects. This is the case for organic food products, which consumers associate with natural processes and the non-use of pesticides and fertilizers , all of This study highlights a higher willingness to pay for ethnic foods with these three attributes. This result is in line with the work of Menapace et al.  who undeThis study also confirms that, as with any other food, there are differences in consumer perception of date fruits from different countries. This result is in line with the work of Thorgersen et al.  who showRegarding socio-demographic characteristics, this study indicates that there are differences in the way demographic groups perceive date fruits. This contrasts to some extent with the work of Zepeda and Li  2006) a06 a20], The generational results reveal that millennials have a lower willingness to pay for labeled ethnic foods than Generation Z (the youngest). This result is corroborated by Blanc et al.  who findResults in relation to education level underline that more educated individuals have a greater willingness to pay for labelled date fruits. This result is in line with Alphonce et al. , who finIn addition to socio-demographic characteristics, psychographic characteristics were found to be factors affecting willingness to pay for ethnic foods. This finding is consistent with several studies in the literature that show psychographic variables play a key role in consumer attitudes and perceptions ,59,60,61The European Union is the largest importer of ethnic foods such as date fruits in the world. As results, it is important to understand the European consumers’ preferences for this type of foods from different countries. Therefore, this study examined the attitude of European consumers towards imported products and specifically ethnic foods.This study contributed to the theoretical understanding of consumer’s responses to multiple quality cues and more specifically of consumer preferences for fair-trade, organics, geographical indication, and country-of-origin effects. It shows that consumers assign a high level of importance and are willing to pay more for ethnic foods with these labels.The fact that consumers are willing to pay more for food from one origin than another confirms that country-of-origin is indeed used as a quality cue. For food exporters, an important implication of this study is that country-of-origin image and various certification labels matter in consumers’ food choices, even when the product concerned is an ethnic food that is not a cultural product of the country of consumption.Moreover, beyond understanding the behavior of French and Italian consumers with respect to ethnic foods, our empirical results may prove useful in refining the strategies of actors in developing countries in terms of promoting ethnic products in international markets. Indeed, on the one hand, our results give an idea of the consumer profiles’ sensitivity to the different signs of quality and those whose targeted marketing campaigns may be necessary to conquer new markets. On the other hand, our results can help guide public policies to support development and marketing to respond to new market opportunities for ethnic foods.Additionally, our empirical results for French and Italian consumers motivate several important avenues of research to better understand consumption behavior toward ethnic foods. In fact, other methods such as choice experiments and non-hypothetical choice experiments could be used for these studies to better understand consumer behavior.However, the study shows some limitations that could be considered in future research. In fact, in the survey, only verbal descriptors have been used to identify the European consumer perception and willingness to pay for ethical food products, which might mimic a real market in a less realistic way. Moreover, to test the hypotheses regarding the acceptance of ethnic products, only two markets  and one product (date fruits) were tested. From our point of view, further research should (i) simulate real shopping environments, where the choice sets are designed with real image and sensorial analysis to increase the accuracy of the results, and (ii) consider more markets and products.


Rare disease patients face many challenges including diagnostic delay, misdiagnosis and lack of therapies. However, early access to diagnosis and therapies can modify the management and the progression of diseases, which in return positively impacts patients, families and health care systems. The International Rare Diseases Research Consortium set up the multi-stakeholder Working Group on developing methodologies to assess the impact of diagnoses and therapies on rare disease patients. Using the patients’ journey on the diagnostic paradigm, the Working Group characterized a set of metrics, tools and needs required for appropriate data collection and establishment of a framework of methodologies to analyze the socio-economic burden of rare diseases on patients, families and health care systems. These recommendations are intended to facilitate the development of methodologies and to better assess the societal impact of rare diseases. Rare diseases, defined as affecting < 200,000 in the US or fewer than 1 in 2000 people in the European Union, are uncommon when considered individually but with as many as 7000 rare diseases–5. Even Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention. Three new goals were set :Goal 1: All patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their disorder is known in the medical literature; all currently undiagnosable individuals will enter a globally coordinated diagnostic and research pipelineGoal 2: 1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved optionsGoal 3: Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patientsIn February 2017, the International Rare Diseases Research Consortium (IRDiRC) defined it’s vision and goals to achieve by the year 2027: Develop methodologies to assess the impact of diagnoses and therapies on rare disease patients. IRDiRC members nominated experts across many disciplines that could contribute their knowledge to efficiently execute this goal. The members of the WG3 are shown in Table As such, Working Group on Goal 3 (WG3) was established to evaluate the specific needs, metrics and tools for addressing the third goal of IRDiRC: A call for nominations was opened to the IRDiRC membership to identify qualified individuals to form the IRDiRC WG3. Members of the WG3 were selected based on expertise, with thought given to ensure that the group was balanced and had complementing expertise. Members of the WG3 Table  comprisePrior to the in-person discussion, 6 conference calls were held to set the agenda and key discussion points. The WG3 convened in Paris, France over two days in February of 2020 to discuss and develop the framework for developing methodologies to assess the impact of diagnoses and therapies on RD patients. The WG3 engaged in discussion to analyze how access to diagnostics and therapies impact the economy of health systems, as well as the socio-economic burden on rare disease patients and their families. At discussion were the requirements for developing methodologies to assess the impact of diagnoses and therapies on RD patients, and a proposed framework for implementing. The results of these discussions were compiled and presented to the IRDiRC Consortium Assembly in March 2021 where comments from all members of IRDiRC in attendance were solicited.The diagnostic journey is often cited for virtually all rare diseases. Patients and families are desperate to know the underlying cause or sometimes even just the name of the disease or condition they are afflicted with. In a recent study conducted in Canada and the United Kingdom, parents of patients with undiagnosed or rare disease were surveyed to determine the information that they value the most. As expected, parents valued receiving a causal diagnosis as well as management strategies to improve patient health, but also valued expanding research to broaden the evidence base upon which diagnoses could be made quickly and accurately . It is tTo understand the impact of diagnoses and therapies on RD patients, we first need to view the journey from the patient perspective. Insight into patient experiences was provided by not only the patient advocate representative on WG3, but also by other members of WG3 who have had extensive experience working with RD patients and have an understanding of the struggles they face. In addition, challenges faced by RD patients is well documented and widely understood by those in the RD community , 9–12 InWhile improved health and wellbeing is the ultimate goal for rare disease patients and their families, it is important to also consider the socio-economic impact of living with a rare disorder –16. IndiAccess to diagnosis and therapies can influence the management and the progression of diseases which can impact not only patients and their families, but also health care systems (HCS) that provide their care. Patients with rare disease can pose a challenge to most health care systems that are not equipped to provide the specialized diagnostics and care that are needed, particularly in countries that lack rare disease programs or robust referral systems to specialists. However, even in countries with access to rare disease programs or advanced diagnostics, RD patients can still face challenges that may be related to costs, lack of awareness, or insurance. This can lead to increased healthcare expenditures impacting not only patients, but also HCS and providers, thus reducing the efficiency of care. In addition, the increased burden on health providers, long diagnostic odysseys, the need for specialized care, and the high price of approved treatments can result in disproportionately high health care costs , 19. TheThe WG3 identified that the development of methodologies is dependent on the preliminary selection of metrics highlighting how access to diagnostic and therapies impact the health quality of rare disease patients, the socio-economic burden on patients and families, and the economy and efficiency of HCS and insurance companies. For patients and families, the most important factors to consider are quality of life (QoL) or health outcomes and the socio-economic burden of RD. When considering QoL/health outcomes, one must consider not only the physical health  but also the mental health of patients and/or their families, while socio-economic factors such as work/productivity (particularly for caregivers), finances, and social integration are also important. In contrast, HCS must consider both the economic cost and the medical efficiency of providing care to RD patients. To provide the best care for patients, HCS must consider the diagnostic process, delivery of treatments, clinical trials where approved treatments are not available, and collection of patient outcome data. These must be balanced with the economic cost associated with RD patients, such as reimbursement for tests or drugs that are not covered, the high cost of therapeutic drugs for RD, and the overall cost effectiveness of treating each patient Fig. . The catAs we consider the impact of RD for both patients/families and HCS, it should be noted that the factors mentioned above are closely linked, which we hypothesize to be an inverse relationship between the burden/negative impact on patients/families and the burden/cost on HCS. This is illustrated in Fig. Although the concepts above appear to be at odds, it should be noted that this is presented from the viewpoint of the various stakeholders involved in the WG3. By identifying the key metrics with which to develop effective tools for measuring the impact of rare diseases, it may be possible to re-align these concepts such that they are synergistic and mutually beneficial. For instance, improvements in care and QoL for the patient does not always equate to increased costs for the HCS/insurer. In fact, in some instances, costs may actually decrease as a result of better disease management and a reduction in healthcare utilization. Therefore, it is important to ensure that HCS and insurers are positioned to work alongside researchers and advocacy groups to collectively understand how the burden of RDs can be reduced, whilst ensuring benefits for all stakeholders.Develop methodologies to assess the impact of diagnoses and therapies on rare disease patients, we have defined the needs along each step of a patient journey, and the tools from which those needs could be met. Figure It is evident that the needs of rare disease patients are currently unmet and much work remains to address the long diagnostic journeys encountered by patients, the lack of treatments for many diseases, and the high socio-economic burden on patients, their families, HCS, health insurance companies, and governments. To address those unmet needs, and to achieve the third goal of IRDiRC: Developing methodologies to assess the impact of diagnosis and therapies on rare disease patients requires identifying the needs of the patient themselves. The WG3 developed a template representing the patient journey with respect to diagnosis and therapies. In Fig. To truly ascertain the data that we propose is needed, it requires various stakeholders. As noted above and in Fig. Patient age, time to diagnose and quality of the diagnostic.e.g. pediatric populations need an accurate diagnostic made at birth or in a short time (less than a year) after disease manifestation. Failure to diagnose early on will negatively impact the clinical intervention, increase the socio-economic burden on patients and families as well as the economic costs on the HCS.DiagnosticMeasure of prevalence at birth, number of patients, age distribution and mortality.e.g. measuring the prevalence of diseases is required to plan appropriately for their health care needs and is also useful clinically by providing context for diagnostic decision-making. Lack of data on disease prevalence will impair the time and quality of diagnosis, delay the development of proper health care resources, increase the economic costs on HCS and increase the socio-economic burden on patients and families.PrevalenceEvaluation of the burden, disease progression models, disease registries, patients reported outcomes.e.g. collection of real-world evidence data and conduct of qualitative natural history studies is essential for understanding the progression of a disease, developing its management strategy and supporting the development of safe and effective drugs and biological products for rare diseases. The lack of qualitative natural history data will negatively impact the clinical decision-making and therefore increase the economic costs on HCS and the socio-economic burden on patients and families.Natural history studiesPatient-centered outcome measure (PCOM), standard of care, alternative treatment, informed treatment response.e.g. patient-centered outcome measures are essential for characterizing patient unmet needs and designing effective clinical trial studies and intervention leading to the development of data-driven support decision tools and new therapies for rare diseases. Failure to design effective clinical intervention will impede the clinical management of the diseases and therefore negatively impact the socio-economic burden on patients as well as the economic costs on HCS. Conversely, PCOMs are also important in understanding the potential negative impact of prohibitively expensive interventions on the social, emotional, and economic burden on RD patients and their families. This highlights another key issue in RD, namely that even when a diagnosis is made, the intervention can still be challenging and filled with just as many obstacles as the diagnostic journey itself.InterventionThe WG3 identified data elements that need to be considered for measuring how diagnosis and therapies impact the socio-economic burden on patients and families, and the economy and efficiency of HCS. These data elements can be categorized into 4 broad areas: Diagnostics, Prevalence, Natural History Studies, and Intervention. These are described in greater detail below and summarized in Table 3Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention” as defined by the IRDiRC Consortium.In the world of rare diseases and the often long diagnostic odyssey that patients endure, it is evident that new tools are needed to improve the overall patient experience, identify new treatments, and reduce the socio-economic burden of rare diseases. As such, the work of IRDiRC in establishing working groups adds tremendous value to solving some of the greatest challenges facing rare disease patients. Through these working groups, IRDiRC provides an important venue through which groups of international stakeholders can convene and discuss essential topics to advance the diagnosis and treatment of rare diseases. The IRDiRC WG3 has developed recommendations on the metrics that are necessary for the development of new tools that will allow for faster and more accurate diagnosis, and to assess the overall impact of diagnosis and therapies on rare disease patients. These recommendations have been presented above and form the basis for continued collaborative work amongst the international rare disease community as we work towards a collective goal to “


Health systems based on primary health care (PHC) have better outcomes at lower cost. Such health systems need regular performance assessment for quality improvement and maintenance. In many low- and middle-income countries (LMICs), there are no electronic databases for routine monitoring. There is an urgent need for valid and reliable tools to measure PHC performance.This study aimed to adapt and validate the Primary Care Assessment Tool (PCAT) in the Ugandan context.The experts that participated in the Delphi process were recruited from almost all over the country.The study utilised a Delphi process with a panel of 20 experts  who responded to iterative rounds of questionnaires in order to reach consensus (defined as > 70% agreement).Consensus was reached after two rounds of the Delphi. In round one, four items in the comprehensiveness domain (services available) were removed and five items needed rephrasing. A new domain on person-centredness with 13 items was suggested. In round two, the new domain with each and every single one of its items and the items for rephrasing all achieved consensus. The final Ugandan version of the PCAT (UG-PCAT) has 12 domains and 91 items.The South African Primary Care Assessment Tool (ZA PCAT) was adapted and validated with an additional domain on person-centredness to measure primary care performance in the Ugandan context, and can now be used to measure the quality of core functions of primary care in Uganda.The PCAT could fulfil the need for such a tool in a wider LMIC context. The UG-PCAT will be used to measure the quality of these core functions in Uganda and to assist with the improvement of PHC. Therefore, valid and reliable tools are needed to measure primary care performance to identify performance gaps which can then be targeted for improvement.The World Health Report 2008, ‘PHC Now More than Ever’, emphasised people-centred health services that are responsive to the needs of people and communities.10 the Quality of Outcomes Framework (QOF),11 the Primary Health Care Performance Initiative (PHCPI) framework,12 the European Primary Care Monitoring Framework (EPCMF),13 and the Patient Centred Primary Care Measure (PCPCM).14 The latest global approach to PHC performance measurement is the WHO framework embedded within the PHC theory of change as described in the PHC operational framework.15 These tools and frameworks have been used to measure PHC performance in different countries around the world.17 Such tools should effectively measure the core functions of primary care through patient surveys as recommended by WHO.18 The core functions of primary care are defined as first-contact accessibility, comprehensiveness, continuity, coordination, and person-centredness. Among all these tools and frameworks, the PCAT has been widely used to measure PHC performance focusing on the core functions as experienced by patients.The global need to measure the performance of PHC has led to the development and validation of several tools and frameworks, which include the Primary Care Assessment Tool (PCAT),19 Most measurement indicators focus on inputs and outputs, particularly coverage and population health for prioritised conditions such as human immunodeficiency virus (HIV), tuberculosis (TB), malaria and maternal mortality, with relative neglect of the broader system, service delivery and final outcomes.20 Primary health care is a complex system and there is no single tool that can measure all the domains included in its framework. Different tools have been developed to measure particular components of PHC, and the PCAT measures the core functions of primary care.15There is need for robust evidence to guide primary care policy and resource allocation, particularly in low- and middle-income countries (LMICs) struggling with weak health systems. Most studies on PHC have focused on policy, payment systems, workforce, community engagement, frameworks for performance management, provider competence, provider motivation, provider-patient relationships, and person-centredness as well as comprehensiveness of care.21 Studies have found poor data quality, given the diverse methods and tools used in its collection.22 Therefore, data may be difficult to rely on as a basis for decision and policy-making. Additionally, such health information is collected with negligible, or no involvement of the people served. In measuring the quality of health services, particularly primary care, the key functions should be assessed from the patients’ perspective, and the PCAT tool allows such an approach.10Countries with well-established health information systems and large electronic databases can more easily monitor the performance of their primary care systems. This is not so easy in LMICs, where there are often no electronic medical records and minimal routinely collected electronic data. In LMICs, routine health information systems have been implemented to collect health information at regular intervals.17 However, the PCAT needs to be adapted to the local context for validity and reliability given the cultural and contextual differences that exist among populations and health systems around the globe. It is also important that tools to measure PHC performance are regularly updated and aligned with new ideas, policies and guidelines by global bodies such as the WHO. This study aimed to adapt and validate the South African version of the PCAT to the Ugandan primary care context for use in measuring primary care performance in a district health system (DHS).The PCAT has been used in several regions of the world to assess the quality of PHC services and some core primary care functions.The Delphi technique, with a panel of experts, was used to adapt and validate the South African Primary Care Assessment Tool (ZA PCAT) for the Ugandan context.In Uganda, primary care is provided through the DHS that is composed of the Village Health Team (VHT) at level I, followed by different levels of Health Centres (from levels II to IV), all operating under the Health Sub-District (HSD) leadership and governance. The general hospital then forms the apex of the DHS for these primary care facilities. The Ministry of Health (MOH) formulates PHC policies and provides stewardship on their implementation and overall functioning of the health system. Primary care providers include nurses, midwives, dispensers, clinical officers (mid-level clinicians) and non-specialist doctors referred to as medical officers. Due to the scarcity of doctors, primary care services are mainly provided by clinical officers, nurses and midwives, with support from community health workers. This primary care system lacks gatekeeping and therefore is characterised by patients bypassing the lower-level health facilities to seek care in hospitals and specialised centres.23 The selection was based on their conceptual understanding of primary care as well as the Ugandan context. Experts included family physicians , district health officers (because they oversee the district primary care system), primary care academics (because they are familiar with updates and trends in primary care), and technical personnel in the directorate of clinical services in the MOH (because they are familiar with primary care policy formulation and implementation). The selected experts were contacted by telephone and invited to participate in the study. All the contacted experts agreed to participate in the panel. The final panel included 10 family physicians, 14 district health officers, 4 academics and 2 technical staff from the MOH.A panel of 30 experts was purposively selected as recommended in literature.The South African version of the PCAT (ZA PCAT) measured 11 primary care domains  with 82 Consensus was pre-defined as 70% agreement among the experts and four rounds were planned as follows:Round 1: The questionnaire was sent to the panel by email and a follow up telephone call prompted them to complete it. For each item, two questions were asked: (1) whether the topic addressed in the item was relevant to the Ugandan context and therefore should be kept, and if not relevant, then the experts were asked to explain why and suggest an equivalent replacement item, and (2) whether relevant items were phrased appropriately and if not, to suggest alternative wording. Experts were also asked to confirm the relevance of the domains and to suggest any new domains or items.Round 2: The items for which consensus was not achieved in round 1, together with any new suggested domains or items, and any suggested rephrasing of items were compiled into a new questionnaire. This questionnaire was again emailed to the panel. Any qualitative feedback and percentage scores for the items from round 1 were also included. The experts were asked to provide further feedback on these items. At the end of each section, the experts were again asked to give any additional qualitative feedback and to suggest any new domains and/or items relevant to the Ugandan context.Round 3: This was planned in the same way as round 2.Round 4: A face-to-face workshop was planned for the panel to reach a final decision on any items that did not achieve consensus in rounds 1–3. The nominal group technique (NGT) was identified as a useful process that could be used in the workshop.This study was approved by the Health Research Ethics Committee at Stellenbosch and the Makerere University School of Medicine Research and Ethics Committee. Written informed consent was sought from the experts before their participation in the Delphi process. The experts were informed that their participation was voluntary and that they can withdraw their participation at any stage of the process with no negative consequences. S20/04/103 and REC REF 2020-164. 26 May 2020 and 15 September 2020.The final panel that actually engaged with the Delphi process consisted of seven family physicians, seven district health officers, four primary care academics, and two MOH technical staff in the directorate of clinical services. All 20 experts completed two rounds of the Delphi process, after which consensus was achieved on all domains and items.The consensus of the panel was to retain all 11 domains. Within these domains, consensus for retention was achieved for 73 items. There was consensus to remove the following four items from the domain of comprehensiveness (services available):Checking to see if anyone in your family qualifies for any social grants, for example, old age pension, child support grant, disability, TB.Suggestions for nursing home care for someone in your family.Help with food supplements such as Ensure or food parcels.Access to termination of pregnancy services at or via your facility, if required.Eight items required re-phrasing from the socio-demographic characteristics, comprehensiveness, and cultural competence domains .26 All the re-phrased items and the items suggested for the new domain were included in a new questionnaire for round 2 of the Delphi.Two expert panel members suggested an additional new domain ‘person-centredness’ and also suggested 13 items for the new domain based on a literature.The new domain person-centredness with all its items achieved consensus when presented to the panel of experts . The 3rdThe UG-PCAT was adapted and validated through a 2-round Delphi despite the originally planned four rounds and an NGT. Four items were removed, six items were re-phrased, and a new domain on person-centredness with 13 items was added. The UG-PCAT is therefore very similar to the ZA-PCAT, and this may be a reflection of the broad similarities in context. The removed items, in the domain of comprehensive services available, reflect a different model of care, which does not include such services. This is because of the differences in approach to social services and legality of termination of pregnancy. Eight items were rephrased to suit the Ugandan vocabulary, culture and context.27 As one doctor must be a gynaecologist, this decision cannot be made in primary care settings. The Ugandan human resource policy allows employment of gynaecologists in secondary and tertiary care hospitals. Social grants, food supplementation and food parcels are not offered in the Ugandan setting. Social grants were a new phenomenon with the coronavirus disease 2019 (COVID-19) crisis, where certain vulnerable groups were offered food and money during lockdown.28 Care for patients in nursing homes is not possible as such homes are non-existent in both public and private settings. In adapting the tool, there is a tension between removing items that are not contextually relevant and removing items that may be considered essential to the measurement of that domain from a global PHC perspective. In our view, the removal of these items should not significantly weaken the reliability of the measurement of comprehensiveness in our context.Termination of pregnancy is illegal in Uganda and is only done for medical indications when three senior doctors agree.31 This same approach was used with the experts assessing the content validity of domains and items rather than the construct validity. This approach of using multiple stakeholders caters for all perspectives within the complexity of primary care delivery. The process has usually involved a series of Delphi rounds with some including the NGT to achieve final consensus.31 This was not necessary in this study, maybe because the process in South Africa had already adapted the PCAT into the African context. Some authors have also utilised focus groups particularly for the rephrasing of items.31Adaptation and validation of PCAT tools has previously been done using panels of experts comprising primary care practitioners, family physicians, policymakers, health system managers, and in some cases health consumer organisations and patients’ representatives.32 The same three items removed from the Kenyan version were also removed from the UG-PCAT and were from the same domain of comprehensiveness (services available). Therefore, other than the added person centredness domain to the UG-PCAT, the two versions are very similar. This helps to confirm the validity of the tool and the changes made for the East African context.The Kenyan version (KE-PCAT), also adapted from the ZA PCAT, is similar to the UG-PCAT with only three items removed and two rephrased.18 All the 13 items to measure the person-centredness domain were adopted from the Physician-Provider Communication Behaviours scale that was developed in neighbouring Kenya.26 All the items in the person-centredness domain achieved consensus for inclusion in only one round of the Delphi. Therefore, they are likely to be valid for the Ugandan context, which is very similar to the Kenyan one. However, they may need adaptation and validation in other African settings before use.The original PCAT and the ZA-PCAT measure the core primary care functions of first contact access, continuity, comprehensiveness and coordination, but not person-centredness. Addition of the person-centredness domain to the UG-PCAT allows it to measure all the core functions as recently defined by the WHO.18 The UG-PCAT therefore provides exactly the kind of tool envisaged by the WHO for measuring the core functions of primary care.The UG-PCAT is quite lengthy compared to other versions and requires significant time to complete. This may compromise the feasibility of its use, particularly in busy primary care settings. However, it may also be possible to exclude the domains on teamwork, cultural competence, family-orientation and community-orientation, if the tool is streamlined to measure only the core functions of primary care as per the WHO measurement framework.30 Only 29 items remained in the Malawian version of the PCAT. Such reduction of domains and items makes the tool easy and quick to use, but also carries a high risk of losing the psychometric properties of the original version. Performing EFA on a tool that was already reliably constructed was probably unnecessary and resulted in a version that would be difficult to use outside of Malawi. The results of the Malawian PCAT will also be difficult to compare to results from the South African, Kenyan and Ugandan versions.The process of adaptation and validation of the ZA-PCAT in Malawi involved exploratory factor analysis (EFA) with significant exclusion of both domains and items.It is important to note that the PCAT does not necessarily measure what is important to the patients or users of health services, but their perception of the quality of primary care services. Therefore, other tools will be required to be responsive to patient satisfaction with services.The UG-PCAT can now be used to measure the core functions of primary care in Uganda. The researchers plan to implement this within the rural Tororo district and investigate whether the measurements assist the district health services to improve quality of service delivery. Other researchers in the Ugandan context can also use the UG-PCAT.18 This will align the tool with the WHO framework and make it an attractive option for governments and health services to use in the African context. At the same time, this will also shorten the tool and make it more feasible to use.Although all the domains were retained in this version of the UG-PCAT, it makes sense to focus on the domains that measure the core primary care functions as defined by the new WHO measurement framework.Thought should be given to the creation of a PCAT tool that can be used across multiple countries in the region or even for sub-Saharan Africa as a whole. The South African, Kenyan and Ugandan versions of the PCAT are sufficiently similar to enable this.Other versions of the PCAT (the managers’ and providers’ versions) should also be adapted and validated for use in the Ugandan context. These will help to comprehensively measure the performance of primary care from the perspectives of other key stakeholders in the delivery of quality primary care.The users’ version of the ZA-PCAT was adapted and validated to measure primary care performance in the Ugandan context. A new domain on person-centredness was added. The UG-PCAT is now able to measure the core functions of primary care as per the new WHO measurement framework. The PCAT could fulfil the need for such a tool in a wider LMIC context. The UG-PCAT will be used to measure the quality of these core functions in Uganda and to assist with the improvement of PHC.